Tag Archives: Preemies

First Step in Healing the Inner Baby

When I still had the diagnosis of dissociative identity disorder, my inner children came out relatively often to people I know. This is not common with DID I’m told, and was probably one reason for people not to believe me. I now have a diagnosis of borderline personality disorder and, while the inner children are still there, I keep them in hiding. I tend to believe that only the adult me is allowed to be out in the body.

This belief, however, is counterproductive to healing. When we want to heal, we need to acknowledge all parts of ourselves. We also need to validate our experiences. I strongly disagree with the idea, which is how my therapist used to word her inner child theory, that only the abandoned inner child should be allowed to come out because the rest are there to mask her. I consider my angry innenr child as important, and I for one don’t have a critical parent insider – all insiders are part of me.

Trust is the first step in healing your inner child(ren). They need to know that you will be there for them. In this step, I achieved something important in art therapy last Thursday. One of my inner children is the “mini baby”, a preemie in an incubator. She isn’t really active in the outside world, but I sense her. For clarity’s sake, while some people with DID have baby alters who hold traumatic memories, I don’t believe the mini baby is like this; she seems to be more a symbol for my early experiences.

Anyway, in art therapy, I created a baby out of clay and made a crib for her out of a cardboard box with fabric and fake fur bedding. Like I said, the inner baby isn’t a typical alter, so the symbolism was enough. It was more of a gesture to myself and my actual inner child alters to let them know I can be trusted and they will be cared for.

The second step is validation. I’m not sure I really need to validate the inner baby, since like I said she’s not a real alter. I mean, some people with DID give their inner babies pacifiers. I won’t do this. What I do feel that I need to acknowledge, is the fact that I was wounded from the beginning on. I don’t mean this to pass judgment on my family or the hospital staff. I was probably well cared for and had more interaction with my parents than many preemies from earlier generations or whose parents lived farther from the hospital. What I want to say is that, as much as families and hospitals try to prevent this, a NICU stay can entail a form of attachment loss and can, depending on the baby’s temperament, be traumatic. For now, the symbolism of the ceramic baby in the crib helped all of me.

Diagnonsense: Blindness and Autism

Today was treatment plan review time again. This inevitabley means that my diagnosis needs to be reviewed too. Last September, this meant a change of diagnosis from dissociative identity disorder and PTSD to borderline personality disorder. I also have a diagnosis of autistic spectrum disorder or Asperger’s depending on which professional you ask. The details of this diagnosis – whether it’s Asperger’s, autism spectrum disorder, or something else along the spectrum entirely -, don’t bother me. What does bother me is the constant questioning about whether I truly am autistic or all my difficulties are normal for someone who is blind.

I have read a fair amount of information on this, and it is true that blind and autistic people display overlapping behaviors. For example, many blind children (but not most adults) flick their fingers in front of their eyes or rock back and forth. These “blindisms” are also common in autistic people. Blind people also can’t use visual cues to communicate. This led my therapist to assume that all blind people are clueless about for example sarcasm used in speech. Generally, it is recommended that the criterion on non-verbal commnication be left out of the equation when deciding whether someone who is blind meets the criteria for an ASD.

I don’t care about this single criterion as it isn’t the only one in the diagnostic manual. What I do care about, is when underlying mechanisms of autism are attributed to all blind people. For example, my therapist said that all blind people have trouble keeping sight of the big picture. This may be so to a certain extent, in that all blind people again miss visual cues, but it isn’t like all blind people have no clue how to generalize daily living skills from the training facility or parental home to the independent living situation. My support worker, who had extensive experience with blind people, told me when I moved into independent living from her training home that I could obviously clean my apartment, as “a bathroom is a bathroom”, etc. To me, it certainly isn’t. Similarly, most blind people beyond early childhood don’t get overwhelmed by noise. This again led to a horrible misunderstanding when I, early in my independent living experienece, had a meltdown over a fire truck driving by.

Now I don’t care what my diagnosis is as long as I get the right support, but this is exactly where questioning my autism diagnosis is problematic. People with only a mobility or sensory impairment cannot get support. They can get a housekeeper, but they can’t get anyone to help them organize their lives or navigate social or practical situations.

A general rule is that, if normal strategies for the blind do not work, there has to be something else going on. I’ve lived in enough facilities for the blind to know my behavior clealry isn’t normal for a blind person. In fact, it was the staff at the training home who first sought an autism evaluation for me. They didn’t seek this for all their clients. In the end, my current therapist also left the diagnosis untouched, but I get sick and tired of constantly having my needs questined. Of course, I know I truly have “preemie syndrome”, a constellation of neurodevelopmental problems commonly associated with premature birth, but this isn’t a formal diagnosis and won’t ever be one.

Musings on Premature Birth and Quality of Life

A few days ago, I was googling preemie parent blogs. I also was allowed into a preemie parent support group on Facebook. I disclosed right away that I’m not a parent but was myself born prematurely, but the parents loved to read my insights. One issue I’m struggling with in particular is that of quality of life as an argumetn for or against trating certain preemies in the NICU. One parent in the group said somethhing to this effect: that being loved beyond words is a good enough quality of life.

Even though I suffered from about every major complication in the NICU that is used for quality-of-life indicators – eye damage, a brain bleed, lung problems -, and I came out having major disabilities, I consider my uality of life pretty good. I realize I could’ve been more severely disabled, and that many parents deal with kids (and eventually, adults) who need more care than I do. Heck, on my ward I fall right in the intermediate range of care needs.

My parents at one point were in doubt about whether I should be treated, but they were told off by my neonatologist, saying they were just keeping me alive and not to interfere. This neonatologist later defended rigid policies on preemie treatment (whereby babies under 25 weeks gestationa re not treated), saying he sometimes meets preemies about whom he thinks: “What have we done?” I wonder at times if, were he to meet me, he’d think the same. I know that, judged by my writing, I’m pretty high-functioning, but I do need substantial support.