I suppose you could call this post the third chapter of my daughter’s journey to her autism diagnosis. In the first post “sometimes there is NO regression” I wrote about being forced to realize there was something wrong with my daughter. In the second, “The Biopsy” I shared how we were told she might have a potentially life-threatening condition (the biopsy result was negative).
But after her biopsy (shortly before her second birthday) our daughter started exhibiting strange new behaviors – she would close her eyes for prolonged periods, shake her head rapidly, stare and “zone out” so that we would have to call her name repeatedly to get her attention, and most disturbingly roll her eyes back so that all we could see were the “whites of her eyes.” Surprisingly (since our kids almost never do what we want them to for their doctors!) she had an eye-rolling episode during an appointment with our pediatric neurologist, whose immediate response was, “This is NOT normal.” The neurologist strongly suspected our daughter was having seizures. We had just breathed a sigh of relief that her biopsy was negative, now we would have to hold our breath again to see if her brain was short-circuiting, and if so, how serious the activity was.
We left that doctor’s visit with a referral for a 48 hour seizure study. The timing of it was awful, but when you’re connected to an internationally known hospital you can’t pick and choose your dates. Our stay in the hospital would happen during Holy Week, the busiest week of the whole year for clergy (both my husband and I are pastors, although at this point I was home full-time). It would mean that other than making the drive in to the city for admission and picking us up at the end, my husband wouldn’t be able to be with us at all. He HATED that, and I did too, but we didn’t have a choice. His parents came to stay over at our house to take care of our older daughter, and off we went.
Admission included having electrodes glued to our daughter’s head then having it wrapped up so she couldn’t pull the electrodes off. Once that was all done and we were settled in the room my husband kissed us both goodbye and headed home. In my diary entry the first night in the hospital I wrote to my daughter:
“It took the technician over an hour to do the head measurements and put the electrodes on and wrap your head. You were beside yourself. You screamed and used all your muscle to try to get away so Daddy and I had to hold you down. It was torture for you, plain and simple. The worst part was as you were screaming you were looking at me and saying with your eyes, ‘Why are you letting this happen to me – please save me – why are you letting this person hurt me?’ I cried and cried.”
Nowadays you can go home with these EEG’s – but nine years ago we not only had to stay in the hospital, but my daughter was literally on a leash – the electrodes that were attached to her head were attached to a cord that was attached to the wall, so we were also pretty much trapped in her room. We had a roommate – a teenage girl who was definitely having seizures – and she had the window bed, so we couldn’t even look outside. I slept on a couch in the room. It was our world for 48 hours.
I can’t imagine how confusing it was for my little girl – to have her parents hold her down while she screamed to be free, to have people “mess” with her head (when she was VERY sensitive with anything having to do with her head), to be in this strange place, to not see her daddy or sister, to be “chained” to the wall and not even able to walk in the hallway. There were a few smiles though.
One late afternoon we got to meet MINNIE MOUSE. Yep, Minnie visited each room in the unit and posed for pictures with each of the kids that wanted one. That really meant a lot, not just to my daughter, but to all the children – and their parents. Thank you Disney for making my little girl smile.
My daughter was cooperative and exhibited all the suspicious behaviors while she was admitted. The neurologist called us the following week to confirm that her EEG at all points was normal. The incidents we were witnessing were behavioral in nature – very unusual, but not impossible. Now we can look back and understand it as sensory related – the head shaking and eye rolling probably as a seeking behavior, while the zoning and “eye-closing” might have been a response to sensory overload. This is all conjecture though, because she certainly wasn’t telling us, and by her third birthday most of these behaviors disappeared just as mysteriously as they came (except for the head shaking).
So we found out what WASN’T wrong – no mitochondrial disorder, no seizures. But we still didn’t know what WAS wrong. Why was she so delayed? At this point her only diagnoses were her symptoms – hypotonia (low muscle tone), developmental delay (physical), developmental delay (cognitive), developmental delay (speech). By the time she was 2 1/2 years old, however, we were starting to wonder, “Could it be autism?”