Special Needs Adoption, Adopting Special Needs - In the Beginning…Let the Rages Begin

Parenting Children with Special Needs Blog

02/18/08

In the Beginning…Let the Rages Begin

Posted by : Julie in Parenting Children with Special Needs Blog at 12:31 pm , 437 words, 320 views
Categories: A Day In the Life of Attachment Disorder

I was so unprepared for what lie ahead with parenting LuLu. I knew nothing about post-institutionalized children. And there was no one telling me. Our adoption agency did nothing to prepare me (except supply me with a reading list). I clearly remember the only book that hinted at attachment problems, Toddler Adoption: A Weaver's Craft by Mary Hopkins Best. I remember slamming the book shut, convinced that “that will never happen to us”. The issues she describes in that book are so tame compared to all we’ve been through.

The one advantage that Super Dad and I had were that we were veteran parents of healthy kids. So, even in our sleep-deprived state, we started noticing many of her odd behaviors. LuLu had numerous repetitive behaviors and could play for hours alone with a sunbeam coming through the window, or an object with textured fabric.

But she couldn’t/wouldn’t attempt to speak to us. In fact, the noises she made where grunts, whines and screams…never crying, cooing or babbling. And she was nearly two years old. We played Chinese children’s songs, hoping to trigger some recognition of the language…nothing. We took her to a favorite Chinese restaurant, where they spoke to her in Cantonese…still nothing.

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The Early Intervention professionals recognized that speech was an issue and assigned a speech therapist. But they didn’t see any sensory issues or motor issues, so no OT or PT was assigned. I was happy with this, because I took it as a sign that we only had one problem…a speech delay. I had no clue that they really had no clue what they were dealing with either.

Then, about eight months home, averaging about 3 hours total a day in sleep, LuLu began having tantrums the likes we’d never seen before.

Yes, we knew about the “terrible twos” (or threes). But this was different. We’re talking head banging, totally despondent rages that would last the minimum of an hour, sometimes longer than two. And she was completely inconsolable.

Sometimes the trigger was correcting her in some way…moving her away from something she was about to get hurt by or telling her “no”. Other times there appeared to be no trigger. One of the most violent rages happened at her big sister’s softball game, where for what appeared at the time to be no reason, she just started clawing me repeatedly. I finally put her on the ground, to keep from any further injury, where she curled up in a fetal position and clawed herself.

We needed help.

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Comment from: nancyderen [Member]

I truly admire your love and dedication in hanging in there with a child who has had so many unexpected disabilities and issues to work through. It sounds like Lulu truly has healed emotionally in so many ways. From what you describe, she sounds very much like many of the people I work with who have a combination of Asperger's or high-functioning autism and PTSD (which is actually a not-uncommon combo for young adults who have spent years being abused in institutions, the situation most of my guys grew up with). Reading your blog always makes me upset that you haven't been offered autism services by your school district, because it really sounds as if that is a major portion of her disability, and there are very specific evidence-based practices to treat it, which no parent can do alone (although if anyone could, it would probably be you!) I hope you are eventually able to find some autism services in your community- ABA, autism-specific speech and sensory and behavioral therapies, and social skills groups. While Lulu also sounds so much like my daughter in so many ways, whose combo platter seems to have the main ingredients of OCD, PTSD, ADHD, FAS, traumatic brain injury from one of the many beatings in infancy, and lupus, many of Lulu's behaviors also sound almost exactly like my high-level autistic young adults. It frustrates me so much when I read that apparently because Lulu has several other disabilities or issues, this very serious and treatable one is being ignored by many so-called professals (in your school system, at least) because they can claim it can't be diagnosed due to her other disabilities. This seems to be just a way of passing the buck when a kid is too conmplicated for their taste. Autism and Traumatic Brain Injury are the two educational classifications that often best serve kids who are bright in many ways but seriously disabled in others. Emotionally disturbed is not appropriate as an educational classification when there are other, more physiologically based issues, and it certainly isn't giving credit in your case to how much Lulu has healed from the emotional disturbances. It drives me nuts every time I see a kid get denied services for one disability just because there is also another disability (or two or three). Does the autism matter less just because there are other disabilities too? Sorry for the rant- I just see this kind of thing all the time and it upsets me, and you sound like such wonderful people- you deserve better.

Permalink 02/19/08 @ 11:09