We were fortunate enough to have Dr S. travel to our area to give a lecture along with a Q&A. It was nice to have him linger afterward and visit with part of Savannah ‘s local professional team. While Dr S. and I had kept in touch via email and phone over the years, he had not seen her since our follow-up visit, which was fifteen months after the initial visit. Savannah had been four and a half. She was nine when he visited us. He was aware of the regression and self-injury, but didn’t realize the extent until he saw her and spoke with some of her local team. While we were terribly concerned about the continued spontaneous regressions, the self-abuse and aggression well exceeded the range found in ASD. Favors were called in, and we were sent six weeks later to a self injury specialist in Minnesota.
What a trip.
Savannah cannot fly, so we drove for two days. Luckily, Savannah loves rode trips. Unfortunately, Joseph does not. A night was spent at the halfway mark, just west of Chicago. Savannah, still not potty trained and with unknown GI issues, messed terribly in one of the beds. We should have known it was an omen. Before falling asleep, an episode hit. A full blown episode with banshee shrills, barred fangs and a head that repeatedly thudded into the floor. I could only imagine what the other guests thought, and I waited for management to appear. But they didn’t, and floods of melatonin later, she was asleep. We tucked Joseph and Lucky the Dog into the other bed and sighed heavily into the couch.
At 3:00am, the banshee wails began again. Forty-five minutes later we gave up trying to calm her and opted for an early check-out. A very early check-out. The honest reality: what would we have done if management had shown up? We are not in our small town. We couldn’t have our pediatrician or one of our meriads of therapist show up and advocate for us. What a stranger would find is a beaten and bruised nine year old screaming like fire has rained down upon her. CPS would be the result, if we were lucky, and we are never lucky. So we opted to get back on the road.
I’m not sure how we managed with a howling self-inflicting child, a sleeping child and Lucky the Disoriented, but we made it to the van. John ran inside to grab the guaranteed twenty-four hour complimentary coffee and to check us out. He came back empty handed. The coffee was empty, and the desk clerk asleep. John abandoned the check out papers unattended on the front desk.
We headed to Dunkin’ Donuts for coffee and the hopes of sugary Savannah appeasement. Instead, we found the country’s most unqualified customer service worker. “One dozen donuts,” John ordered. “Half glazed. Half chocolate.”
“You want what?”
“A dozen donuts.”
But the man interrupts , as he proceeds to take someone’s order inside. We wait and wait.
“You want what?” the fragmented voice asked again.
“A dozen donuts. Half glazed–”
“Nah. Nah. They have me working the counter and the drive through.”
John raised his voice. “Hello?”
But the distant voice continued his crackling conversation. “Yeah. Yeah. So I’m doing both.”
“Yeah, so did you decide what you want?”
John and I exchanged glances before he tried again. “A dozen donuts. Half glazed and half chocolate.”
“What kind of donuts do you want?”
“Six of them glazed. Six of them–”
“Whoa-oh- oh-oh. Oh that was close. I dropped it. Did you see that catch?” And as the the Worst Dunkin’ Donut server continued his conversation, we drove off into the darkness. Luckily, a twenty-four hour McDonald’s waited around the corner with promises of coffee and appeasing hash browns. The car was calm, as we sat in the gas station parking lot waiting on John. Across from the gas station was a beautiful farm. Pinks and purples and oranges streaked over the pastures, with clouds that glittered with the approaching sunlight.
“Go! Go! Go!” John jumped in the van.
“Okay but look,” I tried to point to the farm.
I returned my attention to the gas station to see a brawl breaking out next to our van. We hastily pulled out from the station with John strapping in the kids as we drove. Certainly it couldn’t get any worse, and it didn’t.
The scenic route through Wisconsin and Minnesota was breathtaking. Even the wrong turns were ascetic, off beat diners intriguing, the cranberry boggs beautiful, the farmlands peaceful, the small towns iconic, and the food awakened taste buds I didn’t know existed, even if I was constantly reminded there is no sweet tea up north.
The hotel was incredibly clean and the staff was good with a special needs child. Most people think of a clean room, good service and working cable, all very important things, but when you travel with a special needs child, the list grows longer: a quiet dining area, the staff doesn’t stare or whisper, your child is treated like any other guest and not ignored. Our hotel, the Staybridge Suites, was amazing, which removed a late amount of stress.
The day finally arrived for the visit with the self-injury specialist. We had emailed back and forth for the previous month, exchanging questions and emailing videos. I had consented for other Minnesota professionals to be consulted. The end result was a rare genetic disorder, Hyperekplexia (HPX).
HPX is a rare disorder, which simplified, is an uninhibited startle reflex. Savannah actually has the genetic form, which is more rare, hiding in her duplication in chromosome Xq22.1-22.2. Even more rare, she has the minor form, not the main form. When she was an infant, she would make what we called “the body builder” face. Her legs would go stiff and her arms would tense inward like she was flexing. Her babydoll face would pucker, and everyone would awe. We had no idea the stiffness was anything significant. As with most HPX, after the first year, things are less severe. The body builder face was gone by nine months, and eventually she no longer screamed and tensed when touched by water. As sufferers with HPX grow older, the usual startle symptom is that of fainting or seizing, but with Savannah it’s a panic attack.
When a panic attack hits, it hits with all the forces of nature. Her eyes dilate. The sparkling blue of her irises drown in a desperate black hole. A heat rises in beneath her creamy flesh. Her skin reddens, sunburnt from the inside. The banshee wails escape between gasps and saliva, turning her lips white and releasing a purplish ring circling her mouth. She becomes a little wild creature bent on escape, bent on destruction, and she will. She will destroy anyone and anything she comes across: beloved toys, walls, parents, herself. Claws and fangs emerge with the inhuman strength adrenalin brings.
After the adventure up there and the month if consults and prep, we left with our diagnosises in what seems a short time. So then it was time for fun.
I was thrilled to have my parents meet us in Minnesota. It’s wonderful to have such great support but even more wonderful to have such great entertainment. And grandparents are always entertaining.
There is a wonderful free zoo in Minnesota, the Como Zoo. You’d think you can’t go wrong with a free zoo, but you’d be discounting Savannah. The zoo was beautiful. Flamingos greet you at the entrance, and Savannah loves flamingoes. Savannah does not love heat and crowds. Although, she did find the polar bear fascinating as he leisurely swam in his water, slowly stalking a fish. We left the Como Zoo abruptly in the throws of a melt down.
On the way back we spent time in Chicago, never expecting to make it out that way again. We tried the Shed Aquarium, knowing Savannah enjoyed the Dallas World Aquarium years before. She did enjoy the Shedd, but again it was brief. We tried for authentic Chicago-style pizza, but the restaurant was dark and the wait terribly long. My father left with her shortly after the pizza arrived.
The next day we attempted the Field Museum and the Adler Planetarium. (ASTC memberships are always a good idea!). Again we had the same experience, a small amount of interest and enjoyment and an abrupt exit, with the exception of the space walk. Entranced, by the glitter-lit stars, she broke away from me and ran into space, where she panicked and grabbed a random dad. Frightened of the dark, longing for the stars, she had to do it. Cautiously, she rode on John’s back through space, while Joseph and I clinched each others hand and followed. (I did cheat and kept my other hand on the mirrored spacey wall.)
We grabbed a Chicago dog as we fled the Adler, but all in all it still was a good trip. We didn’t get the full experience, but we had some experience. Savannah finally ate her Chicago pizza, in the comfort of the Staybridge Suites, and Joseph got to ride a shuttle simulation before our early Adler exit. We have pictures in front of Wrigley field, drove to Frank Lloyd Wright’s House on the Rock (it was closed), came across Ohio Falls where Lewis and Clark shook hands and their adventure began, and when lost we stumbled upon the first sight of the Ringling Bros Circus in
WI, all the while with Lucky the Well-Traveled panting in the seat best the kids.
We brought home extravagances like cranberry honey and cranberry cheese and a rare generic disorder.
There was a small amount of disappointment that we would never be that way again, but here we are, three years later, heading back to Minnesota, by way of Chicago and Wisconsin. I can’t wait to try everything again, especially the food.