What Neuro Has Done for Us

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We adopted our daughter from China in June 1998, when she was 19 months and a mere 19 lbs. Having been in the orphanage since she was 2 days old and restrained in a crib most of her life, she was not walking, had never eaten solid food and knew nothing about playing with toys. We were oblivious to any "real" problems she might be experiencing, and were told that her special needs classification was "rickets," which our doctor quickly decided she did not have. Her physical development caught up quickly -- learning to walk/run happened overnight and her appetite was good. The only immediate problem area was her inability to sleep. Soon her lack of language began to trouble me, and we had her evaluated by the Early Intervention program, where she qualified for speech therapy.

After being home with us a year, her behavior began to change radically. Instead of being withdrawn, and exhibiting many signs we now know as attachment problems -- high threshold of pain, no eye contact, independent self-care -- she started tantruming. Not a "terrible two" tantrum, but rages that lasted hours, with lots of self-hurting behaviors. Well-meaning "experts" in child development/pediatricians, etc told us repeatedly that her lack of language was leading to the intense frustration that produced this behavior, but we were not convinced. As I researched the possible causes, attachment disorder and adoption issues related to attachment started to ring true. This was the summer of 1999, and I was fortunate to find Lynne Lyon and others through the PAC list and signed on as an early member of the Attach-China e-mail list. This was my lifeline. Before long I'd located a "local" therapist (more than 80 miles away), gotten an official diagnosis of RAD and was learning a new way to parent. My daughter's language picked up significantly, and we were thrilled, but so many other behaviors just seemed to worsen.

In March 2001, we did a weekend intensive with Walt Buenning, who honed our holding therapy skills and taught us a great deal about parenting attachment disordered children. Again we saw improvement in some areas, but worsening in others. Violence, hypervigilance and an intense need for control seemed to get worse with each passing month. My life was consumed with this child and our family relations were straining. I had started my own consulting business in January 2000 and left my full-time job to have more time to get my daughter to therapy and keep her in a structured environment. By 2001, I had all but abandoned working. I was starting to despair that "I just wasn't doing something right." It seemed to me that all the families on Attach-China were having success with their treatments, but we were not. By fall of 2001, I was slipping into a depression.

My daughter was kicked out of our church's preschool in October, at about the same time I went to the ATTACh conference and heard Larry Van Bloem from Cascade speak about neurofeedback and QEEGs to help treat RAD children. What he said was definitely convincing, and by December we were headed to Utah to do a week-long neuro intensive. My husband and I were trained to operate the equipment and brought it home to do daily training.

We did daily sessions from December - June (2x a day until March) and have completed nearly 300 sessions at this point. Our results were not immediate or overwhelmingly apparent -- they have been more subtle -- but in retrospect, we have seen a lot of changes. Our daughter's Q (QEEG) was read by neurologists at Q-metrx (Jay Gunkleman) and interpreted to us by Larry. We did the Q in Utah, although we had located a local provider here in Atlanta who was capable of doing the Q as well. Our daughter was more than 2 standard deviations off of normal in several places on the Q -- basically a seriously dysregulated brain. It was definitely a sobering blow to have Larry declare that she had one of the most dysregulated brains he'd ever seen, since he has seen hundreds of children with RAD and severe behavior disorders. But it was also a confirmation as to why my best efforts at attachment parenting weren't being successful.

The one immediate positive result we saw was improvement in sleep -- both getting to sleep and sleeping through the night. This started to change at the end of our week intensive and changed drastically the first 2 weeks we where home. This was a miracle and worth the money, since she generally only slept 3-4 hours a night and it took several acts of Congress to get her to sleep each evening. Now she sleeps from 9 pm - 7am almost every night, with no waking or nightmares. Just catching up on my sleep helped immensely with my own emotional state.

The next thing we started to see was a general "brightness", and she became slightly more attentive and interested in things. By March she was answering the question "why" and even asking it some herself (something she had no concept of before). She was more purposeful in her speech, asking meaningful questions. She was also more open and more organized in the things she was able to tell me about China. It is amazing what a 19 month old brain has stored in its memory about past trauma and abuse that comes out at 5.5 when you finally get the brain organized enough to tell it.

Over the last few of months we have seen a calming of her behaviors -- fewer tantrums, less hitting, scratching, etc. The scabs on my arms and hers actually healed up completely for the first time in 2+ years! The preschool teacher reported her being more attentive in class with fewer tantrums. And she's happier: she smiles and laughs spontaneously, gets jokes, and finds things on TV that are funny. Although I know TV is not a goal, it was amazing to me a couple of months ago when she was able to watch an entire 30-min. video and stay seated for the whole thing. Since then, she has had her first "obsessions" with videos -- wanting to watch Toy Story and one of the Veggie Tales videos over and over. She has also been able to tell me about the stories that are read to her at preschool. She's actually sitting through the story and listening -- a major step. She also tells me "I love you" unsolicited. We are able to work on the appropriate vs. inappropriate behaviors around strangers in a much more cognitive way. Before I had to keep her physically glued to me to keep her from wandering off, coming up to strangers or getting into things. We can now go shopping without having to put her in the cart and she won't wander off.

The Q pointed out how severely affected her sensory motor area of the brain is, prompting us to get another OT (Occupational Therapy) evaluation (the three previous ones had not indicated the need for therapy) and to start Sensory Integration therapy. I think the SI symptoms are much more obvious now that she is able to be calmer and we're not just running around dealing with the behavior. Larry's work at Cascade has led him to believe that the combination of neurofeedback and SI therapies is very effective for many of these children with dysregulated brains. Our experience would bear this out. We do brushing & compression, as well as auditory processing therapy.

The improvements from these techniques are not immediately measurable, but the cumulative effect from the combination has been astounding. In every area of her behavior we've seen improvement. When she "loses" it, she is able to tell us why she's upset and even what emotion she's feeling -- anger, sadness, frustration, etc. And now she "wants" to control herself. She wants to make "good choices" and doesn't want to hurt Mommy. Before she was insistent that she was bad, wanted to hurt Mommy and wanted me to throw her away. It's like the neuro has allowed the attachment parenting to break through to her brain and she "gets" it.

She is anxiously attached in some situations and shows a normal attachment in others. The RAD doesn't seem to be near the problem it used to be. She is taking violin lessons, and having the patience to practice and deal with the frustration, and it is doing wonders for her self-esteem. I even see glimpses of wanting to interact with peers and caring about their feelings, sharing, etc.

Without the neurofeedback, I'm not sure that our adoption of our daughter would still be intact. We were reaching a desperate place, and the neurofeedback was the answer. It was so affirming to hear Larry say that what was wrong was so much more than RAD -- a totally dysregulated brain. I think that this could be true for other parents of post-institutionalized children, ones where their infancies of poor nutrition, neglect and possibly abuse all combine to affect how their brains are actually formed. We describe our daughter like an onion. The neuro has peeled off the brown outer layers and I can finally work with the meat of the onion. All the HT and attachment parenting is starting to take root. I think eventually EMDR and other therapies to address her trauma will be useful as well. I anticipate always having to deal with my daughter in therapeutic ways, but our success to date has been nothing short of miraculous. Finally we actually "like" this kid, which makes loving her so much easier!

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