The Steak-n-Shake incident.
In prior posts I have described my experiences being a mom of Rachael, my Special Needs Child with Epilepsy. Epilepsy has not been the only challenge.
Medications! Some have worked, some haven’t. Some have resulted in strange, bizarre, and violent behavior. Early on, a medication Rachael was on stunted all development. She wasn’t learning, or progressing and this was a big concern for me. All parents want their children to reach all their developmental milestones.
I asked her Neurologist for help. I really liked this Neurologist, but his comment was, if it ain’t broke, don’t fix it. But it was broke! I convinced him we needed to look at it and to try to improve things for her.
An MRI was done. The results came in. I received a written report. I could understand the majority of the radiological terms, but I had questions. I was very self-educated (this can be frustrating for Doctor’s when a patient or patient’s relative questions results, wants to know more and doesn’t just take Dr.’s orders at face value). I wanted to be the best advocate for my daughter I could. I wanted to help her to be HER best self. I had no mis-conceptions that she would be normal. I wanted her best normal for her sake.
I called and requested an informational appointment to go over the results of the MRI with the Dr. I was told the Dr. is very busy. I again reiterated that I wanted to discuss the results of Rachael’s MRI with the Dr. The individual I spoke to on the phone replied, “It means your daughter is MENTALLY RETARDED.” I was absolutely speechless for several seconds. I knew this. I did not need them to tell me this. I responded by telling her to cancel any future appointments that we would not be returning…ever.
I found her a new Neurologist. We tried different medications. Some caused other problems, complications, depression, behavior problems, extreme weight loss, obsessive-compulsive behaviors, food-seeking. At least one was taken off the market for deaths due to loss of kidney function. We moved, had to switch to a new Neurologist, tried more meds.
Now to my point…Rachael was also pretty drooly. It was hard to find childcare because no one wants a kid drooling all over. I had to find care in my own home, and Rachael wore bandannas (in every color to match her outfits) instead of bibs (she’s not a baby). They would be soaked and replaced with a new dry one every few hours and we could easily wash them. Some days were better than others. One Dr. proposed we try a Scopolamine Patch. These patches are typically used for motion sickness, but tend to dry up oral secretions (dry mouth). We decide to give it a try. It had been maybe a week when Mike (the guy I was newly dating) and I decided to take our kids out to eat.
We met at Steak-n-Shake, me with my two kids, and he with his two kids. As soon as we were seated, Rachael grabbed her silverware and started pounding on the table, yelling…. “I WANT EAT!” [These were the days of food-seeking for her. She could eat the food off her plate and steal the food off yours too, if you weren’t watching. She was not allowed to do this, she simply couldn’t help it. She was always hungry.] At the restaurant, I told her that we had to wait our turn and then we would be able to eat. I also took the silverware away. This only made things worse. She started screaming louder…“I WANT EAT!!!”
This had not happened before in public (aside from a grocery store incident). I told her that if she did not quiet down and behave that we would be leaving (not an empty threat). She screamed louder!! The other children were sinking in their seats (I wanted to hide too!). I asked Mike if he would bring Sarah home after they ate and told him I would be taking Rachael home. He agreed. I stood up, picked up Rachael and she started flailing her arms and legs and trying to squirm out of my grasp. She was still a small child, but I was finding it difficult to hang onto her. Mike had to help me take her to the car, get her in the car, and put her seat-belt on. I had to engage the child lock on the door so she wouldn’t fall out of the car as we were driving.
Mike went back in and I drove away. The entire drive home, Rachael screamed “GO BACK!” while pointing out the back car window and hitting me in the back of the head and kicking my seat. I couldn’t believe it! If any of the other challenges in my life hadn’t scared Mike off, this surely would!! I cried all the way home. And so embarrassing!
We pulled into the driveway and she stopped. I took her in the house and sat her at the table. I explained to her that we would be having sandwiches at home. I also explained that she has to mind momma, she can’t behave like that ANYWHERE, and that there would be no more going out to eat if that ever happened again. We ate, Mike brought Sarah home, and Rachael was back to normal. I was unprepared for what happened the next morning…