In 2008 my son turned 3. I kept thinking the terrible two's would phase out. I even named our adoption playgroup The Terrific Two's and Three's in hopes of a future life without screaming meltdowns and temper tantrums with fists. I had learned to expect the unexpected with my son adopted in Russia 1.5 years prior. Yes, he'd been sick frequently, and yes, he took medications that had ugly side effects. But I would never have been able to admit then that he had a permanent problem, a disorder that might be jumbling up his mind.
After attending several FRUA conferences, that is Families for Russian and Ukrainian Adoptions, I had heard many other stories of adopted children from the far Eastern European orphanages that struggled with many of the symptoms my son had---only his seemed more severe. He could not make eye-contact with me, but he could with others. He wouldn't be still long enough to let me rock or hold him much without becoming very agitated and throwing a fit to get away. He broke all his toys and played so rough that he hurt other kids. He locked onto other boys in a vise-like grip and couldn't seem to let go even when they would wail. He had an hour long meltdown when told no. He flat refused to hold my hand even to cross the street.
Even though my boy was very much loved, he could not return any affection. I thought he had a very hard shell around him and likened him to a feral cat that could not be domesticated. I was so saddened that I might never be able to have a normal relationship with my son because he might be autistic or beyond help. It broke my heart for him that he was unable to get along with others because it meant he had to be so isolated and limited from social activities. He loved being around other kids. He was an only-child.
At 3 years old he was kicked out of the 2nd mother's day out program. He'd bitten a bigger boy on the face and left a huge wound. This was a repeat offense. He was suspended from another for aggression with the children in the classroom. I quit my part-time job and decided to devote myself to giving him more structure and trying the gluten-free diet that I'd heard was working for some other kids who displayed autism. I vowed I would do whatever it took to get my son on track including seeking out professional help.
My first call was to a professional child therapist and attachment specialist referred by several families in our FRUA group. My second call was to a well-known child psychologist in our city who worked with adopted children's issues also. I had both doctors do independent evaluations on my son to determine what plagued him. Both doctors came back with the exact same diagnosis in their reports-Fetal Alcohol Effects or Syndrome, Post Traumatic Stress Disorder, Reactive Attachment disorder caused most likely by the PTSD and possibly ADHD.
One doctor was a man and one was a woman. The woman suggested that my son would need to be medicated to make it through a treatment program. Since my son had such great rapport with men and not women, mainly me, and since he'd been passed around in the orphanage mainly by women caretakers, he had a much more severe reaction the the woman therapist. In order to not have any obstacles in the way, I decided to go with the man doctor for attachment therapy.
We started weekly therapy sessions to help JJ learn to self-soothe and work on the preverbal trauma first. The PTSD was treated with EMDR (Eye Movement Desensitization and Reprocessing). Every week we went and sometimes twice a week. Things were always calmer for a day or two after the doctor had had a session of body work and holding time with my son-with me right there next to him-to allow an entire cycle of rage to complete. Just picking JJ up would set off a rage. The doctor would pick him up and the howling would begin. JJ always had a full body shutter after a rage cycle-and his breathing would change to a more rhythmic pattern. He would relax, and that was one way to know he was done. He would not have another rage for a day or two. This cycle would take an hour to go through with screaming, biting, flagellating, kicking and flailing all over the doctor. The screaming could be heard through the office walls for at least a floor. This was what I'd been dealing with at home by myself and being told by friends and family that it was normal for toddlers to throw tantrums. I never felt like anyone could understand that these tantrums were different. They were more intense than anything I'd seen before. They were animalistic. There was no trigger to provoke them and so no way to avoid them. It was also bizarre that JJ could manage to charm outsiders and save the tantrums for me at home.
After the cycle the doctor would ask JJ to go sit on my lap. He would do that, and the doctor would ask him to look at me. He would make eye contact. During those relaxed moments, JJ could break out of the shell and join with me. So it was during those times that he felt safe. "Why did he have to have a tantrum to get to this place", I asked. I was told that his cortisol, or stress hormone, levels had been so high in the orphanage that he had recreate a scenario to elevate his cortisol levels to what he felt familiar with all his life. It was the survival mechanisms that kept him alive in the orphanage that were keeping him stuck in attempt to live in a family. To bond and attach, he had to trust. JJ was doing all he knew how to do. He was using me to keep his cortisol levels high--and causing mine to raise higher and higher in dealing with him, which in turn gave him more opportunity to raise his own. A cycle. WE were stuck.
After about 6 months of understanding the problem and having therapy weekly, I started to see shorter rage cycles and more mommy holding time with JJ. It was hopeful. Then the rage would come back within a few days and never for any main triggering reason. Nothing would make the child happy. No amount of praise would encourage him or detour him. Our time out chair was broken into many pieces on the floor.
I read every book I could get my hands on regarding bonding and attachment disorders in adopted children, early childhood trauma and sensory integration disorders. I tried everything I could on my own to try to help my son short of medication.
At some point my misery won out, and I started asking to see a child psychiatrist. I was then told JJ had conduct disorder and possibly Aspergers. I got a second opinion, and that time I got pervasive developmental disorder and severe ADHD diagnosis. Since his case was so complex and overlapping in so many symptoms, I really wanted the doctors to take into account the orphanage situation---the trauma from neglect while institutionalized. JJ had rickets from malnutrition when he came home. His medicals from the orphanage said he was weened from the bottle at 6 months, toilet trained at 13 months out of necessity and that he'd been moved from hospitals to several orphanage rooms- all different caregivers- and all for a short amount of time over the course of his 19 months in Russia due to overcrowding and poverty in his village. He had been neglected, very possibly abused physically since he flinched and ducked when he first came home and came near him with my hands, and he rocked and head banged in his crib every single night at bedtime. The back of head was totally flat because he'd been laying on it too much for too long-like the children who are cribbed, which means tied to their beds so they can't get out. JJ woke up early in the mornings but never ever called out from his crib. His first year and 7 months were not a picture of health or nurture. He lived in a survival of the fittest environment amongst the hundreds of other babies, many of whom who were much sicker than he was.
A turning point came when I heard about a doctor, a neuro-psychologist who worked exclusively with post-institutionalized children and had 7 little JJ's of his own. I called him, and was put through to him on my first call! He was in Virginia, and I was on the other side of the US. I told him my situation and asked if he was qualified to do an evaluation on my child. He said, "just get to my office as soon as you can." I worked with his secretary to get an appointment for the following week. I had to fly my wild child to Virginia to see this International Adoption (IA) doctor. I couldn't afford it. I was scared to death of taking him on the plane-after he'd screamed bloody murder all the way home from Moscow for 10 hours on our last plane ride. But I was desperate for professional help by someone who was competent about adopted children's issues.
We made it to the office. The IA doctor came out and said hello to me and JJ, and then promptly took JJ by the hand and went into his office to do some testing for everything from auditory processing to Asberger's. They took breaks and came out, we went to lunch together, and walked around the office building. The doctor wanted to see JJ in action. He wanted to see JJ's attitude toward me. I'd been asked to bring all my Russian medical records and video for a review. I had copies made and had sent them a few days before we arrived. That evening after an all day appointment, the doctor asked JJ to wait in the play right outside the door of his office so he could give me the rundown on what he thought in private.
He first brought out my medical records that were in Russia and had English translations. He asked if I knew that JJ had been a preemie baby? No. Did I know his record from the hospital say he was born in withdrawal from opiates? He had alcohol in his system. His birth mother had had also tested positive for drugs and alcohol. The combination of problems had caused JJ to have a stroke of some type in his first few days, and he'd been on a breathing machine. "No-this is not what the medical said," I told him. So the doctor read to me word for word what the Russian medical statements said, and it was all in there. It just had never been translated. Not the orphanage, nor judge, and not even the caregivers in JJ's baby house ever said a word about any of these things that had made JJ a very special needs baby. But there it was in black and white on the hospital records. Thank God, the IA doctor could read the Russian doctor's chicken scratching. Later I would send those pages off to a Russian-American physician who would fully translate all of the record for me and tell me he was so sorry for my very sick child.
The IA doctor gave me the bad news first-the medical record information and the results of the low low scores on all the testing. The only good news he said would come the next day as we made a plan for treatment for JJ. All the information I had gotten from the day made me very sad, but it also validated my deepest intuition that the severity of JJ's rage and fear had not been coming from simply a behavioral problem. He truly was brain damaged by his birth mother's in utero choices to drink and do drugs and the hospital and orphanage neglect and trauma after birth. He was acting out of trauma and disability. I walked back to the hotel that night with JJ in hand feeling the blackness of utter despair. I felt so sorry for us both. Tomorrow we would return for the good news.
"Now," I asked myself, "how do I raise him according to the standards he is capable of being held accountable for?" So on day 2 of our intervention with JJ, we had a session called intensive family therapy. The doctor showed me how to make a safety plan for JJ, and a daily visual schedule. At one point the doctor was giving me some private information and asked JJ to wait right outside the door. I knew that was a shot in the dark and after two minutes of total quiet had gone on, I said I needed to check on JJ. He was no where to be found. We finally found him running into the street on the busy road in front of the doctor's office building! This was a perfect example of what I meant about me feeling that I couldn't keep him safe for even a minute if I wasn't watching him closely. We found out that through an auditory processing dysfunction, JJ had interpreted "stand outside the door for one minute" as GO STAND OUTSIDE THE DOOR-AS IN THE OUT-SIDE DOOR-OUT SIDE THE BUILDING. So he did what was asked of him except that there were so many interesting things going on in the streets that he wandered off that way. This made sense. This made sense of so many of JJ's outbursts at being told he was doing something wrong. I'd been scolding him when he thought he was doing exactly as I asked--how confusing for JJ! He did as he was asked even when it was scary. That door outside the doctor's office was down 3 halls and a flight of stairs. That took some courage for JJ to do as told-in his mind-and go stand outside the office door.
The IA doctor and I put our hearts back into our chests and proceeded with putting together an applied behavioral analysis system based on JJ's problems and my parenting style for us to take home and immediately put into action. He put the 7-8 part plan on large poster boards for me to tack up to my walls and follow to the letter. He wrote out every piece of the plan for me, and told me to call him when I got home after a week for a consultation.
I have done exactly as he told me to do. Retraining my son has taken bundles of patience, medication, occupational therapy, ABA therapy and work within our home to provide him the proper type of attention for attachment. JJ started sleeping on a sofa bed in my bedroom at night, earning all privileges and repeating with me daily-over and over our safety plan, our home rules, our good words list, our privileges list, doing chores....and slowly but dramatically over one year's period of time, I truly met my son's real personality for the first time. He was more smiley than pouty. He obeyed out of respect and felt proud of himself for earning his likes. He rarely complains. The longer we are on this journey into the solution, the closer we have gotten in attachment.
Since attachment had not truly taken place by JJ when we met the IA doctor, it started when the program started. It took on a life of its own. And the more attached, trusting and open JJ can be the happier he is. We continued with the local attachment doctor who worked with us on our treatment goals with the IA doctor. The last time we were in the attachment therapy doctor's office, my son got up on his lap to greet him with not even a frown and asked if he could sit with mommy. At that point I saw a boy who'd come full circle with attachment. The RAD is gone, and my son was considered a severe case. The PTSD symptoms are gone-except for the deep and hidden insecurity of abandonment that I proactively treat and which may always be a part of JJ's emotional baggage. He tried to fake a temper tantrum the other day-and we both laughed.
The IA doctor has never not returned an email or phone call within 12 hours to me-ever. He has never not given me his honest opinion even when he knew it was going to hurt. He has offered to fight for us with the school board to get JJ the special services we thought he'd need (and now doesn't require). He's offered to see JJ for free. He's kept in touch and put me in touch with many other professionals who are following our case and hoping for JJ's continued success. The IA doctor took pity on this single mom and gave me a discount on office fees. The testing and treatment from all the pro's who helped us changed the quality of our lives. The IA doctor gave to me and to my son a simple plan that instilled hope and the tools to find the way out of the darkness out into the light. We both will always be so grateful to all the pro's for their dedication to this work and to us, their clients.
As a single mom, I feel that the male doctors and therapist's from attachment to Occupational Therapy have been excellent role model for both my son and me. In our last talk, the IA doctor asked when I was going to get back into my own career as a pediatric counselor? He said I'd already done the time....and that other families and adopted kids need the kind of experience I now have since I survived living with the untreated version of post institutional autism and have made it through to the rehabilitated side. So now it is me who is rising to the challenge to meet the great expectations of a wise IA doctor. But rather than start back up my career, I'd much rather go back to Russia and adopt another little one. Who knows? Maybe I'll get a girl version of JJ. For sure, this time around I know that early intervention is key.
No comments:
Post a Comment
Feel Free To Leave A Comment.