47. Just a Little Cream

Dr. John Seals from San Antonio was Sean's neurologist who traveled to The (Rio Grande) Valley to treat children once a month. We liked him and felt that Sean's treatment was moving in the right direction, medication-wise. Sean was still on Prozac and Tegretol and although they were not magical drugs, they helped. 

I am pretty sure it was Dr. Seals who ordered Sean's first EEG to see if Sean's electrical activity in the brain was normal. It would detect seizures too. 

Days before the procedure I asked the nurse how they were going to keep Sean still during the test. She said, "Just keep him awake longer the night before so he will fall asleep. Just bring him in his pajamas".

Uh, what did she just say?

I could tell this very kind nurse knew nothing about autism so in a matter of seconds, I gave her a quick overview with a tone to my voice that implied, "YOU ARE OUT OF YOUR FREAKIN' IGNORANT  MIND, LADY!!" 

I'd like to know just how many children have ever fallen asleep while on a cold stainless steel table in a sterile, harshly lit environment with electrodes stuck all over the head. 

The expectations of some people just overwhelm me.

It was no surprise that Sean was wide awake and didn't cooperate from the beginning. He flailed and flopped around on that table like a freshly caught fish and wasn't about to stop any time soon. He was fightin' mad! Finally, after all of the "No no, Honey, be still now." comments and glances that said, "You didn't follow directions and keep him up did you?", they made the decision to strap him down. I don't know why I allowed this. I knew we were wasting our time because the EEG requires complete stillness for accurate results.

They began to wrap Sean and the table like a mummy. At this point he was starting to give up but was still vigorously moving his head back and forth. Then I watched him take a deep deep breath and let out the longest sigh I'd ever heard. With tears in his eyes and his bottom lip trembling, he gave up. It reminded me of the day in the nursery when I watched him take a deep breath and resign himself as if to say, "Nobody gets it."

The test was performed at last. The results were negative and as far as I was concerned, inconclusive.

There came a time when Dr. Seals no longer treated The Valley children so we had to find another neurologist. We scheduled an appointment for Dr. Rafael Mimbela. He asked me a lot of  questions with accusatory undertones. I don't remember the exact questions but the overall feeling was that I had not bonded with my child and this is why he was autistic. 

Years later, when I learned about the "Refrigerator Mothers", a term coined by Bruno Bettelheim in the 50's to describe mothers of autistic children, I thought about my first visit with Dr. Mimbela.

Dr. Mimbela ordered a second (sleeping, thank you!) EEG and an MRI. Sean was given a mild sedative to conk him out long enough to do the tests. They informed me that he could wake with a headache and to give him Tylenol. When Sean was released he was so completely drunk I had to carry him to the car. When we got home I couldn't get him to sit. He insisted on having fun with his drunken state. He bounced around the house like a pinball.

It wasn't long before Sean stumbled toward me with a tube of toothpaste. He held it to his head and said, "cream?". Anytime Sean had mosquito bites, his dad put toothpaste on them to soothe them. Holding the tube to his head was Sean's way of letting me know his head hurt. To say the least I was thrilled about the communication.

I was thankful that Sean's tests were normal. I was even more thankful for the effort he made to tell me his head hurt. That must have been one badass headache.