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! 




Rachael’s morning after the Steak-N-Shake incident

After the Steak-n-Shake incident (see previous post!)….we went to bed hoping for a better day.  It didn’t happen.

Mom’s always seem to have a sixth sense, eyes in the back of their head, or a kind of super hearing…

I woke, hearing Rachael get up out of bed, head into the kitchen and open the fridge (her bedroom was on the main floor).  Uh oh…I was up, out of bed and heading down the stairs, but I was too late.  She had already grabbed and opened a glass jar of mayonnaise and was spreading it all over herself…WHAT!?  Rachael, what are you doing?  As I tried to remove the glass jar from her grasp, the fight was on.  She would not let go, and she was slippery…it was like an episode of WWF wrestling but with mayonnaise.

I was mostly concerned she was going to break the jar and get cut by the glass.  I finally was able to get it from her and had to sit on her holding both her flailing arms and avoiding being kicked and hit, while she was screaming at the top of her lungs.  Why was this happening?  First yesterday, then today?  I racked my brain to figure out what was happening and why.  What was different?  Well, her behavior that was for sure…as I looked down at my flailing screaming child, I noticed the scopolamine patch affixed Behind her ear…could it be?  I peeled the patch off and called for my other daughter Sarah to come help me.  Where was I going to get an able-bodied adult to help me that was close by?  I had Sarah call my friend Helen, who lived the closest and was familiar with Rachael.  We were both single parents and traded babysitting sometimes.  Although, I think she was more help to me than I ever was to her.

Helen readily and quickly responded.  Her mouth dropped open at the sight of us when she walked in the door.  I told her I had to take Rachael to the hospital but I needed to get us cleaned up first.  She helped me get Rachael cleaned up and then stayed with her while I quickly took a shower and got me and Sarah ready to go.

I took Rachael to the hospital, and wouldn’t you know it…by the time we got there she was fine.  I got the feeling the medical staff thought I was exaggerating, but I have witnesses!  You just can’t make this stuff up!

Needless to say no more Scopolamine patch (Click her for more info about Scopolamine) . Even though this incident happened in 2000, years ago, we had a more recent med change that resulted in another incident…We will call it “Trouble with Rachael at the Mall”…next time…



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…

Rachael…blue mat…icky…blech…NO! Cookie!

Rachael was under the weather with a stomach bug a couple months ago.  This incident was relayed to me by one of her caregivers.

Rachael was feeling ill and had thrown up and had other gastric issues and thus stayed home from school.

RG was keeping an eye on her.

She was snoozing on the big blue beanbag in her living room, when suddenly she sat up.

She smacked her lips and made a face saying “yucky, icky.”

RG asks, “Oh Rachael, do you have a bad taste in your mouth from being sick?”

Rachael replies, “ucky.”

RG asks “Can I get you a drink of water?”

Rachael replies, “No!”

RG asks, “well, can I get you a drink of pop, will that help?”

Rachael replies, a little louder “NO!”

RG asks, “Would you like me to go get your tooth brush and some toothpaste?”

Rachael replies, a little louder, “NO NO NO!” while shaking her finger.

RG says”Oh Rachael, I’m so sorry you are not feeling well and you have a yucky taste in your mouth.  What can I do to help you?”

Rachael replies in a sweet voice, “Cookie?”

Medical Marijuana for Epilepsy

I really found this NBC report on the use of Medical Marijuana for the treatment of Epilepsy very interesting.

The Fight for Medical Marijuana for Epileptic Children

It also brings back memories of incidents with my own daughter, who has Epilepsy.  There is mention of the young girl in the story having “rages”.     I had never heard anyone talk about this before.  I have always thought that all my daughter’s behavior was due to medication reactions, or seizures, or just feeling awful, or because she was frustrated and unable to communicate what she wanted or needed.

One particularly awful weekend comes to mind…

I was a single parent with two girls, Sarah (who is now married, a nurse, and they are expecting their first child), and Rachael.  Rachael contracted spinal meningitis at two weeks of age, spent 7 weeks in Peds-ICU.  As a result of that illness, she has Epilepsy, Cerebral Palsy, and Cognitive Impairment (she will always be a little girl age 3 in a woman’s body).  This particular year was tough,  Rachael was in her early teen years and things were not going well for her.  Her seizures had increased, and we had been trying to tweak/change medications, and none were working very well.  Rachael drooled constantly (side effect?) and we were always changing her shirt and bandannas that we used like bibs (so she wasn’t actually wearing a “baby” bib and we could match them to her outfits). This made it difficult to find childcare.  no one wanted a “drooly kid” in their house.  I had to hire people to work in my home instead.  One of the things that we tried to curb the drooling was Scopolamine.  It came in a patch, and was usually used for motion sickness, but it also tended to dry up secretions.  We were trying it to see if it would work.

I had been dating “Mike” for only about a year or so.  We decided we would take our kids out to eat together at Steak-N-Shake.  His two, and my two.  We met at the restaurant and were all seated at a big table.  Rachael immediately started misbehaving.  She wanted food, and now.  She started banging her fist on the table, yelling, “I want eat!!”

I scolded her and said, Rachael, you can’t behave like that and we have to wait our turn.  It only got worse, and she got louder.  I was afraid she was going to hurt her hand.  I held onto it to keep her from pounding the able and hurting her hand.  She jerked her hand out of my grasp and hit me.  I told her if she didn’t behave and be quiet we would leave.  She started screaming, “NOOOOO!!!”  The other kids were mortified and shrinking in their seats.  I looked at Mike and said, “I need to take her home, can you feed the kids and bring Sarah back home, after?”  He agreed.  As I tried to pick Rachael up to take her to the car, she started screaming, flailing her arms and legs.  Mike had to help me take her to the car. I had to engage the child lock on the car door because she kept opening the door.  I don’t remember how I got the seat-belt on her.  I do remember all the way home, her screaming “GO BACK!!  I WANT EAT!!” while she was hitting the car window and hitting me in the back of the head while I was driving.  I managed to get her home and in the house and the behavior stopped.  I made the two of us lunch at home.  Mike and the other kids came back after they ate.  Sarah was so embarrassed.  Neither of us knew why she was acting this way.

I figured, well so much for Mike.  I couldn’t imagine he’d stick around after witnessing that (he did!).

The next morning, I heard Rachael get up and open the refrigerator.  Her bedroom was downstairs (she fell on the stairs too much) and my room was upstairs.  By the time I got into the kitchen she had the glass jar of Mayonnaise open and was smearing it all over herself.  When I tried to grab the jar, the wrestling match was on, and she started screaming.  I just couldn’t believe the past couple days.  This was absolutely heartbreaking.  I had to sit on her as she flailed and hit me, and slammed the jar on the floor.  I was afraid she would break it and then we’d both get cut up with the glass.  I called for Sarah to come down and help me.  She called my friend Helen to come help us when I decided I needed to take her to the emergency room.  This was not normal.  As I wracked my brain for what was different recently I remembered the Scopolamine patch we had put on her (per the Dr.s recommendation).  I peeled it off thinking maybe that was the problem.  Helen arrived, helped me clean Rachael up, held onto her while I showered and changed to go to the E.R.  She also helped me get her in the car and I headed to the E.R.

By the time we got there, she was normal.  The E.R. Doc looked at me like I was crazy when I had described what had happened.  She was sent home.  I dug up info on Scopolamine and found that one of its reclusive side effects was “Hallucinations”.  But this wasn’t the last, there were more instances of these types of behaviors, but none were quite as bad.

I had never grown up around anyone that experimented with “drugs”.  No one ever offered me marijuana or anything else for that matter in school.  Everyone knew my stance.  I was involved in sports, and Youth group.  I was a “goody two-shoes”.  They all knew I wouldn’t partake.  As I interviewed for my first Law Enforcement job, I was asked what I would do if a friend or family member was involved with drugs, including marijuana.  My response, “First of all If anyone I know is involved in that, they certainly are not going to tell me because they know my stance, and if someone does I would have to tell them I can’t be around that/them due to my profession.”  Apparently that was a good answer.  I was hired.  Later when I interviewed at another department, I was asked if I had ever tried marijuana or any other illicit drug growing up or as an adult.  When I answered, “NO, never.”  They did not believe me.  I was not hired, even though that was 100% honest.

So, now that you know my stance…I have never purported to know or understand those who have cancer, other conditions or chronic pain, feel.  I just don’t know.  I am sympathetic and empathetic and try not to be judgmental towards those who seem to need it.  I am not without my own pain, but I have always avoided using anything illegal, because I toe the line.

I never thought I would ever think seriously about marijuana use.  BUT, as a parent, having gone through some crazy stuff with my epileptic kid…had I known this was an option that could have real benefits to my daughter’s daily life functioning and comfort and it would reduce the amount of seizures she would have, I’d be willing to move mountains for her.  Not for me, but for her.

I understand how people who are working, driving etc should not be impaired.  But Rachael will NEVER hold a job, drive, get married, have children, be cured (although I hope).  I do not advocate any substance ABUSE.  But it does make me wonder why things are illegal and how we got there and why were particular laws put on the books…?  Why do some laws seem to affect certain populations and those in lower socio-economic levels?  Some laws ARE designed that way.  Look at the difference between the penalties for “crack” cocaine (poor man’s drug) and powder cocaine (the white mans drug). Look at our nations history and how it relates to colonialism.  Again, that’s a whole other conversation about privilege, and who has it.

It sure makes one question your own perspective, and what it would take to change it.

For more information about the similarities and differences between Crack and powder cocaine and sentencing differences…go here-> Cocaine and Crack Facts.

I am by no means endorsing the use or abuse of any illegal substance nor am I interested in going down that path, this is not an endorsement of anything like that, just my thoughts about PERSPECTIVE on a hot and difficult topic.

Rachael’s Journey: Epilepsy, Hemispherectomy

This post, a diary of sorts, describes events in the life of our family and daughter Rachael, who has triumphed over epilepsy and continues to bring joy and humor to our lives.

May 12, Rachael’s Birthday

I took Rachael into the E.R. at two weeks of age.  She was diagnosed with Spinal Meningitis.  It was awful.  I had just been released from the hospital from a post -delivery blood clot (DVT).  The weather was so hot.  She slept through two feedings.  I kept checking on her because I thought she should be hungry.  I chalked it up to the extreme heat but tried to wake her up anyway.  When she opened her eyes they rolled back in her head.  She was pale and limp but was breathing and warm.  I called her Dr. and he told me to take her in immediately.

My dad came over and took me because I wasn’t supposed to drive.  I waited and waited for them to come and take her back until finally I walked up to a nurse and choked through my worried tears, “How long are you going to make us wait?  I know you are busy.  I’m not trying to be pushy, but look at her!”  I held my daughter out to her while sobbing.   The nurse’s eyes got big and she rushed us back.  After a spinal tap she was diagnosed with Bacterial Meningitis.  She also had a stroke that resulted from brain swelling.  Rachael was in the neo-natal unit at Butterworth hospital for 7 weeks.  There were many times we feared she would not make it, but she did.  We had no idea what her future would bring, but we loved her.

That fall, Rachael and I enrolled in an infant-parent program at Ken-O-Sha school where parents received support and kids received occupational and physical therapy.  Many of the parents became friends and have supported each other for many years. Many of us still try to find time to get together.

Rachael’s battle with Meningitis left her with cognitive impairment, epilepsy and mild cerebral palsy.  She also lost partial hearing in one ear and we think she may have a vision deficit, but she refuses to cooperate with any testing (SPUNKY!).  But, we loved her.

She did really well for a while until her teenage years.  She started to end up in the hospital every spring and fall in Status Epilepticus (life threatening). At one point she was having hundreds of seizures per day, medication was ineffective, she was unable to go to school, and I was sleeping on her floor to make sure her airway stayed clear.  Rachael was miserable and I was exhausted.  We were told by the hospital there was nothing more they could do for us.  We were sent home to wait for the end.  But we found out there was one more option, brain surgery.  The decision to try this was difficult.  But we knew for her sake we had to do what we thought she would want if she could make the decision, and we knew we could not just give up.

Feb 1991


Rolling over in bed and peeking out the window, as my alarm clock screamed, I realized it was freezing cold and snowing.  Brrr!!  Getting up now would be like dumping a bowl of ice cubes down my back.  I just wanted to stay in my warm safe bed and forget about the many things I had to do.  But, no…Julie is counting on me to watch her kids and give her a ride to school.  I have to get up.  Although there was still this feeling I should have stayed in bed, the day started out pretty well.

When the time came, I picked up Julie, My sister-in-law, and we buckled her kids into the back seat along with mine.  We pulled up to GRCC and just as Julie was getting out, her daughter Mandy said, “Mommy, I don’t feel good.  I have to go to the bathroom.”  Julie took her into the building to the restroom.  When they emerged a short time later, all seemed to be well.  I assured Julie that Mandy would be fine for a few hours and not to worry.  We drove off and headed towards the photo shop where we would pick up my husband from work.  It was about a half hour before he would be able to leave, but I had brought plenty of toys to keep everyone busy.  Mandy had other ideas.

We had only been waiting in the car for about five minutes when I heard a small whining sound coming from my tiny niece in the back.  “What’s wrong Mandy, sweetheart?”  I asked.


She promptly emptied her lunch into her lap and upon the seat of our new-used car!  OH NO!  I told Sarah and Rachael to climb into the front seat, where I buckled them and handed them a pile of toys.  I turned the car heater on a full blast and proceeded to strip Mandy down to her underwear and to clean up the mess.  I put a spare sweatshirt on the shivering little girl and found a plastic garbage bag for her odiferous clothing.  Oh how I wished for a clothespin!  We settled back in to await the remainder of our imprisonment when Mandy started moaning again.  “Ohhh!!  Mommy!!”  I ordered Sarah, my oldest, to keep an eye on everyone and not to touch anything on the car.  I scooped up the groaning green-faced child and ran through the back door and into the little bathroom in the back room of the store.  “Are you ok?”  “No,” she whimpered in a very small voice.  “Well if you have to throw up, do it in there.  Ok?”  I took her sweatshirt off so it would not become another casualty.  I had run out of spare clothing!!

Then to my utter panic, Sarah came running in the back door screaming, “MOMMY!!!  RACHAEL’S DRIVING THE CAR!!!”  I ordered Sarah to stay in the bathroom with Mandy and sprinted out the door in time to see our car backing slowly out of the parking spot and into the adjacent street.  Running to the car, I yanked the door open and threw the lever into park.  “What are you doing Rachael? I told you not to touch anything!!”  Rachael had maneuvered into the driver’s seat and was standing up with both hands on the steering wheel.  Fortunately she had only bumped it into neutral.  I drove the car back into its spot grateful there had been no traffic on the otherwise busy street.

I breathed a temporary sigh of relief and the looked up.  Sarah, curious to see what had become of her disobedient sister, was peeking out the back door.  OH NO!!  Where’s Mandy?!?  While I ran in the back door, Mandy had panicked and headed the wrong way out onto the sales floor and through the crowd of customers, dressed only in her underpants.  I caught sight of her disappearing out the front door to look for me!!  I turned and ran the short distance out the back and caught her up on the way to the car.  I commanded everyone in and to, “Sit down, be quiet, and DON’T MOVE!!”

I felt like the most terrible mother in the whole universe.  I wanted to disappear off the face of the Earth.  Most of all I hoped no one would recognize me as they came out of the store.  Now I chuckle when I think of it, although it was not at all funny at the time.

Rachael will never be able to have a driver’s license but she got her opportunity to drive!!


Christmas Shopping with Rachael

December 22, 2010 at 10:34a

Took Rachael out to lunch and Christmas shopping yesterday.  Panera bread was packed…we could not get in line because it was too narrow for her wheelchair and several people walked right in front of us.  When one realized what was happening they let us in front of them so we could get in line to order.  We ordered and got our food.  An employee carried the tray for me (because have no way to do it while pushing a wheelchair)…he looks all over and can’t find an open table.  He suggests getting it packaged to go so we can sit in the food court.  When two ladies finishing their meal heard what was happening they gave us their table and said they’d walk and carry the rest of their food since they were almost done anyway.  Not to mention all the doors that got held open for us EVERYWHERE! WOW!!!

Thank you!

Happy Fourth of July!!

July 4, 2012

This holiday weekend in July 2004.  I spent the weekend at Cleveland Clinic with my Daughter Rachael.  Rachael has Epilepsy, cerebral palsy and is mentally impaired which resulted from Spinal Meningitis she contracted, battled and survived at two weeks of age.  She had been going downhill and getting worse for several years and we were not expecting her to make it past her teen years.  In 2004, we were told by the local hospital there was nothing more they could do for us, we could try Cleveland Clinic.  They sent us home with Ativan (IM) for when she was in Status Epileptics (almost constantly) and advised us to make her comfortable.  My husband a Firefighter/EMT and I were well-versed in how to give injections.  This was the last resort.  She was having hundreds of seizures a day, interrupting her life.  She could not eat or walk without help.  She spent most of her time at home, not able to go to school.  I slept on the floor in her bedroom many nights, to maintain her airway when she’d have a seizure.  We were waiting for the day she would simply not wake up. Status Epileptics is a life threatening condition that is a state of constant brain seizure and is life threatening.

April 2004, our last resort.  Brain Surgery.  Yikes.  What do I do?  How do I make this decision for someone else?  Let alone my daughter.

We were sent to Cleveland Clinic for an evaluation and work up to see if Rachael was a candidate for Epilepsy Surgery.  In the waiting room we observed children and adults with Frankenstein-like stitches crossing their shaved heads.  Some were in varying states of alertness, some with blank stares; one boy was playing video games.  I started talking to a young adult male who was sitting near me drinking coffee.  He was alone, waiting.   He was cheerful and upbeat and said he had been helped greatly.  When he was called back for his appointment and stood up, he was walking bent over sideways, with one arm behind him holding his suitcase.  I almost dropped to the floor.  How bad was he before the surgery and is this a complication kept flashing in my mind, internal panic.  I did my research.  I checked out the doctors.  I memorized the procedures.  I researched the outcomes of these surgeries at Cleveland Clinic.  Wait for the inevitable?  Or do everything we can to try to ensure the best life possible for Rachael…or could this make it worse?  Such pain.

As parents should we give up and let go?  Could I live with that?  Did I need to do something and not nothing? Could I allow someone to go into my child’s brain and mess around in there?  The numbers and research were in our favor. I spoke to Martha Curtis, a musician who had a similar surgery.  It was helpful to get the insight of someone experiencing Epilepsy.  My daughter could not tell me what it was like. We decided to go ahead with the surgery.  We could lose her now or later anyway, and right now she was miserable and we were beyond worried.

When my employer found out (City of Grand Rapids) they illegally cancelled Rachael’s Health Insurance within 24 hours.  We were able to address the insurance issue legally, and by the time July came Rachael was triple insured, and we had the assistance of Children’s Special Health Care Services.

In preparation for Rachael’s surgery she got a haircut.  We donated her long silky beautiful brunette hair to locks of love.  I cried in the hair salon and pretty much the rest of the day.  Rachael did not miss her hair at all.  She seemed to like her cute bob.

July 4th weekend 2008

My husband Mike and I drove to Cleveland, he sat holding my hand for almost an entire day as we waited.  I prayed that we would not have the Neurosurgeon come out and say sorry but she’s gone.  Instead he came out to tell us all went well, even though it had taken longer than expected.  It was the best thing we could have done for her.  She is not totally seizure free, but she has recovered remarkably well and quickly.  Her health is stable, she rarely gets sick.  AND she is happy and participating in life.  Rachael’s life was saved and much improved.  I have never regretted the decision since.  There is not a single day that I am not thankful to God for helping us through this, to friends, family and co-workers, and to the surgeons, doctors, nurses, home health aides.



Special Needs and Emergencies

Another fact about me…I have a Special Needs Child.  What does that mean?  Well the terminology has changed due to negative connotations of educational and other types of labels.  There is an intensive hands on training that comes with this unique situation.

Rachael, had Spinal Meningitis when she was 2 weeks old.  I love her.  (Just so the other kids know, I love all my children; a bunch, whether biological, adopted, step or whatever.  Some don’t understand it yet, but when they have their own kids they will).

Rachael knows what love is even though Rachael has the cognitive level of a 3-4 year old (but she is 26).  She has Epilepsy, Cerebral Palsy, had brain surgery at age 16 which resulted in Left-sided Hemi-Paresis.  It saved her life.  And it changed her mobility.

In English?  Rachael had an illness at two weeks of age that resulted in brain damage that left her with muscle problems, and seizures.  When her seizures became worse (at the onset of puberty) and life threatening, brain surgery was the only option left.  At Cleveland Clinic they disconnected the two halves of her brain, the good from the bad (the damaged part), which stopped the electrical storms (seizures from the injured or bad part from interfering with her life, turning her into a zombie).  The surgery on the right side of her brain, affected the left side of her body (more on that in future posts).  But the trade off was worth it.  She can’t use her left arm but her life was saved and is so much better. She is present, happy, functional, her old self, no longer miserable, unhappy, feeling awful all the time.

If Rachael is sleeping, don’t even try to get her up (not a morning person!). If she’s outside, playing with toys, eating, and she wants to continue doing those things good luck!! Moving Rachael or trying to get her to go is sometimes akin to pushing a boulder uphill.  As her mother, I have always won these battles (I must!), but for someone else it is an entirely different matter.

So back to Special Needs (aka Functional Needs) and emergencies.  When mom (me) had to be at work there was a babysitter, or Home Health Aide, or family member.  One of the things about Rachael is, she won’t do what you want her to when you want her to do it.  And she can’t do stairs well.

So I was faced with the problem of being at work at night (or day) and there being an emergency that someone watching her might have to deal with.  What kind of emergencies?  In our neck of the woods, a house fire, tornado, storm, or something like that.  So I came up with a plan.  Bad storm or tornado, requiring a trip to the basement.  How to move a sleeping, uncooperative boulder to the basement?  Well we decided if she won’t get up the bedding would go with her.  It was safe and easy to take all the bedding with her on it, off the bed, dragged through the house and a cushioned bumping down the stairs (carpeted) to the safety of the finished basement where the other kids bedrooms are.  Now getting her back up would be my problem when I got home.  No big deal, for mom.

It is these things that parents of special needs kids need to think about.  When they are small you can pick them up and throw them over your shoulder if they have a temper tantrum, or you have to hurry for safety reasons to get somewhere.  When they grow up, it’s a whole different ball game.  You can’t spoil your special needs children, or coddle them.  They need to know what the rules and expectations are, because if you don’t spell that out early, it can be huge behavioral problems later.  Rachael expresses her own opinions and wants to be obstinate, but in the end she knows that Mom loves her, and for her, mom always wins.