Big Trouble with Rachael at the Mall

(Meds and behavior) Big Trouble with Rachael at the Mall

Recently Rachael had another medication change.  Her new-ish Neurologist had been prodding me to try a different benzodiazapine medication (there are many different forms of this type of medication) called Onfi instead of clonozepam.  I put the neurologist off for two years (I remember past medication problems!), telling her that she has been absolutely great on the two meds she has been taking.  The /neurologist seemed to think she knew better so I finally said, “Fine, let’s see what happens.” Sometimes they have to learn the hard way, but I hate for Me, Rachael or any innocent bystanders to have to go through this.

So we tried the Onfi.  The Dr. started her on a small dose, increasing it gradually, as she decreased the clonozepam.  No problems at first…until we went to the zoo.  I first thought she was tired or just in a bad mood.  When she started mis-behaving and I corrected her, she started screaming “SHUT-UP!!” at me while we were in the Aquarium (just so you know it echoes in there).  Her big sister, Sarah was meeting us at the Zoo.  When she couldn’t find us, I texted Sarah to listen for Rachael screaming “Shut-Up”.  Sarah texted back, “LOL, UH-OH!” Sarah has grown up with this so we can afford a little humor between us.  Sometimes it’s all we’ve got!

I decided to catch her on video with my phone because we had a follow-up appointment with her Dr.  I was able to calm her down, and the rest of the day went better.  Until a few weeks later, when we took a trip to the mall on a Sunday afternoon.

I thought Rachael might like to go see the new minions movie.  I purchased our tickets and we headed into the theatre.  She had a noisy toy with her so I tried to get it from her before we went in.  She started throwing a fit.  Hmmm, what to do…I removed the batteries from the toy and gave it back to her.  She’s no dummy!  When she realized it wasn’t working she was mad! I realized there would be no movie with her behavior so we got refund and left.  This also made her upset.  I explained to her that in the movie theatre we have to be quiet, no noisy toys.  If she couldn’t be quiet we couldn’t go to the movie.  The combination of no noisy toy and me taking her out of the movie was too much for her.

As we were walking through the food court full of people, she pitched her toy like a professional baseball player!  This is not an exaggeration! We’ve long thought she would have been a great ball player.  I watched, my hand over my mouth, and in shock as it whizzed right by a lady eating lunch, narrowly missing her head (and scaring her) and landing on the floor.  I mouthed “I’m sorry” and hustled through the food court.  A young girl retrieved the toy, handed it to me helpfully and I hid it in my purse.  Rachael started putting her feet down and pushing her wheelchair backwards as I tried to propel her forwards.

I parked us at a table, put the brakes on and ignored her as I waited for her to calm down (sometimes you just have to wait her out until she comes around to your way of thinking).  Well, things didn’t get better.  She started hitting herself in the face! What?! I grabbed her wrist and encircled it with my fingers with just enough pressure to keep her from hurting herself.  She started screaming “OUCH!!” even though I wasn’t hurting her.  Yikes!  The mall was full of busy shoppers so we were the center of attention.  I said to her quietly (trying to be soothing), “Rachael, no hitting.”  When she relaxed I let go of her hand.  She then began hitting herself on the leg, yelling “Naughty!”  I grabbed her hand again, to keep her from hurting herself and again said “Rachael, no hitting!”

Nothing was working.  But like I have said in other posts, MOM MUST ALWAYS WIN.  In our relationship, I am the boss, and I have to be, or she will get hurt.  She has no safety skills whatsoever. I can’t let her run the show because if I do, the next time will be worse.  I sat quietly, keeping her wheelchair stable while she raged.  This was extremely embarrassing and I wanted to cry (but must not show weakness)!  Who could I call to help me?  My husband was working and too far away so that was out.  Sarah and her husband lived nearby, but they had their hands full with a new baby…No that wouldn’t work.

Well I hated to do it (I hate asking for help in the first place) but I had to resort to asking for help from strangers.  A short slight man was cleaning the tables near us while watching us sideways.  He had a radio in his belt.  I motioned for him to come closer. He came over cautiously, keeping a safe distance.  When I realized he didn’t speak very much English, I resorted to pointing at the radio and asking “Security?”  He understood and nodded his head, summoning help.  At that same moment a tall muscular guy wearing an Under Armor baseball cap (this was a good sign) came over and knelt down next to us.  He said “I have a sister (nodding toward Rachael), can I help you?”   “YES PLEASE!  THANK YOU!”  I told him that it looked like it might take more than us, that I needed to get her out of the mall and into my car and that security was coming.  Two security guards from the mall showed up.  They were great!

Picture this…Security Officer in front clearing the way, helpful stranger holding the front of Rachael’s wheelchair off the floor which helped me, holding on to the back of the chair, to keep her feet up off the floor, Rachael screaming her head off, followed by the other Security Officer.  We got to my car, and she was fine.  She got in, no fight at all.  I thanked them all profusely.  Under Armor man told me, “My wife and I were watching you for a bit.  I have a sister.  I know what it’s like.  My wife told me, “YOU BETTER GO HELP HER!””  This made me laugh.  I asked him to thank his wife for me and that I was very grateful.

I am shocked no one took a YouTube video of it (sorry folks, I was busy or I would have).  So, Rachael lost, momma maintained authority with no one getting hurt (barely).  The Zoo video (it was pretty mild compared to the mall thing) was shown to the neurologist, who said, Ahhhh, we need to take her off the ONFI!  For the next 3 months, I did not dare take Rachael to the mall again, or church, or anywhere else until the Onfi was out of her system. I am happy to report that once it was gone, we successfully went places without any harrowing or embarrassing incidents!

Parents in general and parents of special needs or autistic kids have it really tough sometimes.  I have never spoiled my kids,  they didn’t get things by throwing temper tantrums, in fact they learned early not to do that.  I did not reward bad behavior.  You have to treat your special needs kids like your other kids (well mostly, considering their limitations).  There need to be expectations, they have to behave for parents and babysitters.  I have seen parents let their special needs kids get away with a lot, because they feel sorry for them.  They may be “handicapped” but they are not stupid!  If you let them win they will run the show, and that can’t happen, no matter how little (you can pick them up and carry them out!) or how big they get!  Rachael responds to kind quiet words very quickly. Scolding and yelling only escalates her behavior.  She is usually pretty good and only mildly stubborn for very short periods of time.  telling her how it is,and what is expected, along with giving her time to adjust to a change usually works.

But in our experience, some medications cause nasty side-effects like hallucinations (Scopolamine), fatigue, vomiting, seizures, weight loss, extreme hunger, no appetite, depression, anger and more.  Rachael can’t tell me what’s wrong, so as a parent I have to pay attention. Why is this happening?  Is it simply bad behavior? If the unusual (and shocking!) happens, always look for what has changed, what’s different?  It might be a medical problem, or medication change.

It’s a good thing, we as a family have a sense of humor.  Rachael brings us challenges, some pretty good stories, AND MUCH JOY! 




Medication Interactions and Violent Behavior – you can’t make this stuff up! Or The Steak-n-Shake Incident

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…