Those rotten medications were having unreasonable side effects and we were getting desperate to find something to help our little girl. Our neurologist started talking to us about implants, surgery and special diets.  The funny thing was that I had remembered seeing a movie a couple of years before about a medical diet used in the treatment of epilepsy called, First Do No Harm.  I thought it sounded amazing, but it sure looked like a lot of work and I didn’t think I was one of those ‘alternative medicine’ kind of moms and I definitely wasn’t Meryl Streep!  But, luckily, our doctor was in support of the diet and encouraged us to try it.  Our hospital was one of a few in the country starting up the Ketogenic Diet in their neurology department and our girl would be the third patient through their trial. We decided to go for it! Anything would be better than those insane seizures drugs!

I remember the initial stage of the entire process.  We had to check into the hospital for the week so that our little girl could be starved and obtain something they called ‘ketosis.’  It was a rough couple of days because our little one loved to eat; that was the one thing she did without fighting and now she wasn’t allowed to eat anything for two days! We were lucky the hospital had a play room and classroom to keep her busy.  But, man we were exhausted!  We took turns keeping her busy and found comfort at the local Ronald McDonald House with other parents. Once she could finally eat, her meals were measured precisely in grams for the amounts of protein, carbohydrates and fat that she required.  At first they were tiny and she gobbled them up in an instant!  With every meal she had to chug down a cup of heavy whipping cream-not very appetizing to me unless it’s whipped and accompanying a plate of ice cream.  But, we started to wean her off her seizure medications while in the hospital and we didn’t see any evidence of seizure activity.

Thus began the next chapter in our lives.  We were like hip yuppie drug dealers with our little gram scale sitting in our tiny kitchen, weighing all of her foods to meet her diet specifications.  We had to prepare and pack her lunches for school and warn the teachers that if she got a hold of any candy or other foods, she could have a seizure.  It was crazy, but that little girl was wonderful about it and her teachers were so accommodating and patient. We had to try different things with her whipping cream to keep her interested.  So we added food coloring to it, whipped it up, froze it and made it look like ice cream.  We also had to keep our eyes on her even more to make sure she didn’t get into any food that we had in the house. We even had our little man help us out. He would watch his sister and inform us if she was getting into the refrigerator or pantry. “Mommy, Nony is getting a cwacka, look, look.” We felt so bad that we would often wait until she went to bed before eating our own dinner.  We even made up a song that we would all sing to her about her ‘special diet’ so she wouldn’t have “seizures anymore and take that nasty medicine.”

We were happily seeing some improvements in her behavior and she seemed to ‘get things’ much easier. Her language and speech improved and she even looked better and healthier; her face was rosier and her eyes more vibrant. Maybe being off seizure medications freed up her mind just enough to make sense of her world.  She still had to be on medication for her behavior, but we saw fewer problems with her and things were finally more under control.  Our little girl was six, and Baby Boy was three, and we were living for this diet and all the hope that it held for us. Her seizures dramatically decreased and she was making small improvements at school.

School Journal Entries: (Elaine Stephens, Maggie Grove, Andrea Siebert and Paula Josey)

February 8^th, 1999:  Good day-it was hard on all of us not to feed her.  She just looks so much better, behavior has been much improved and she is able to stay focused on an activity for longer than a split second.  Her speech teacher said it was her best speech session for months and we all got big hugs!

February 9^th, 1999:  Everything going just fine.  It was so nice to have the sweet girl again.  She even colors calmer.  She ate lunch in the room with Maggie and went outside when the others had their snacks.  How should we handle the Valentines’ party on Friday?

February 17^th, 1999:  L has been orally spelling her name again, she made an “L”, while coloring she chanted “stay in the lines”, and she told Andrea that she was going to “eat in two minutes”.

February 19^th, 1999:  Maggie and I think she is doing and looking a lot better.  She sat quiet in computer class while the teacher read a book.  Her manipulation of the mouse is getting slower and more precise too.  We have noticed that today and yesterday she has started to bite her shirt, it’s probably related to being hungry, lots of things have been going in her mouth lately.

March 9^th, 1999:  L has had a very good day today.  She has been busy telling us about the many things that catch her interest.  She especially enjoyed listening to nursery rhymes this afternoon.  She ran an errand with Ms. Stephens today and followed directions well. 

March 22^nd, 1999:  She didn’t want to eat her lunch today, but Maggie was able to convince her!  Yes, we will get her dressed up for you so you can get those pictures with Baby Sam!  She has been doing more work independently lately and actually wrote her name-I did not help her!

March 29^th, 1999:  L has been very quiet today and she didn’t have her snacks.  She did a great job in PE.  She worried us a little but maybe she’s so quiet because she didn’t sleep good.  I’m sending you a menu in case you want to match her meals with the cafeteria.  She doesn’t seem to mind that others are eating different food. 

May 6^th, 1999:  She had a really good day although I think she has learned to push my buttons!  I worked in the room at recess and Little Miss decided to stay on the play equipment instead of lining up, she made me come up on the bridge to get her and she was grinning from ear to ear the whole time!  It was hard for me to maintain my MAD face!

May 7^th, 1999:  L had a good day.  Her high school buddies came and she played a game with them.  Her high school buddy said he was really impressed with how well she was talking and interacting with him.  She put a 60 piece puzzle together too!  Maggie is going to be out another week to spend time with her son, it’s been hard on her since her husband passed away.  L asked if she “was coming right back.”

May 26^th, 1999:  Great day, she got a special award from Mr. Garner.  Wish you could have seen her face whey they called her name!

Those bad times seemed to start up again at the beginning of her fourth year in school so she would have been six years old.  Things had been going pretty well and we were even in our very first house.  We were starting to feel like a real family and we were enjoying living in a neighborhood; watching the kids play together while we sat outside talking and laughing with the neighbors. Then her seizures spiked and her behavior went haywire once again.  “Same song, second verse, a little bit louder and a whole lot worse.”  We worked with her doctor and changed her medication for something that was supposed to be “newer” and “better.” I was beginning to dread those words!  Every time we went through a medication change or dosage change it was like that poor little girl was possessed; so here we go again.

Months of wild behavior were simply side effects of the medications to control her seizures and her teachers were smack dab in the middle of it, along with the rest of us. Her little brother was quickly learning that his big sister was different.  He had been through so much with her already and he learned quickly to dodge her arms and legs when she went swinging.  Despite that, he was protective of her and during one of my many angry moments at her, he proceeded to tell me not to yell at her because her “bwain was diffwent.”  Honestly, that boy was only three.

We were all learning to watch what we said around her.  How could she help herself, she was probably being eaten up on the inside. Her teachers were ready at the helm to keep us informed with daily journal entries in her little spiral notebook.  They were diligent in their lookout for seizures and in recording the type of behaviors they were seeing, complete with a sense of humor for all of our sakes. We wrote back and forth in those spiral notebooks often. It was comforting for me to have them to communicate with about my little girl; they understood everything and more. But, even though they ‘understood’ everything, nobody really knew what was going on with my baby girl and even her doctors felt sorry for her. What we did next was to become an important step in the right direction, it was alternative that’s for sure, but nothing else seemed to work with our little girl.

School Journal Entries (Elaine Stephens, Andrea Siebert, Paula Josey, Maggie Grove):

*November 6th, 1998: Well, she was very tired this morning. She’s on a new seizure medication called Topomax-along with everything else. It’s a new drug that’s supposed to be better at controlling her type of seizures. Side effect is drowsiness but I notice that the drowsiness makes her irritable. If this medicine doesn’t work, Lauren could be a candidate for a new implant or surgery or a special diet. Hope you all live through this one! Let me know if you see any changes or any staring.

November 6^th, 1998:  Not as much staring today after she got to school, but they did notice it on the bus.  She has been very impulsive and stubborn, saying “shut up, shut up” and “fa-oo”, and telling us “no kicking” as she’s kicking people.

November 9^th, 1998:  L has had a rough day, lots of trying to bite, hit and pinch herself and she tried to bite Maggie.  Lots of “shut up” and throwing herself on the floor.  She doesn’t seem to be herself today and we noticed a lot of staring off into space.

*November 13th, 1998: We were in Houston and I went to a discussion about Epilepsy. Here is the information about my support group, please hand out to parents that you know. She’s been OK, just having violent eruptions when she’s mad, the medicine makes her drowsy still. 

November 13th, 1998: She was a little scary today and kinda oppositional, lots of shut ups and don’t hit me, etc.

November 18^th, 1998:  L still having problems in PE, maybe over-stimulated or too much freedom, lots of “shut up” and hitting, biting, especially herself and some on Josey. 

November 20^th, 1998:  Very shaky today and also trying to beat me up, pinching, hitting, trying to bite me and lots of yelling “shut up, Ms. Josey”.  I don’t like that new medicine! 

*November 23rd, 1998: Paula, I know what you mean, I guess she has it out for me and you. She’s always hitting me and telling me to shut up. I just can’t understand! I worked this weekend and she was pretty good for daddy…….

November 30^th, 1998:  Sorry you had such a bad Thanksgiving.  Our morning started that way, she was writing on other people’s papers, unfastening her pants in circle time, stood on the chair, constant “shut up”, some hitting.  She had to sit with me.  She kept hitting Frank and had to be removed from the class, she kept saying “shut up mommy.”

*December 1st, 1998: We had lots of hitting yesterday. Her brother fought back! I guess her new annoyance is undoing her pants. She was doing it a lot when we were outside. What’s the best thing to do about all this hitting? It’s driving me crazy, she really will get you hard!

December 1st, 1998: We all agree that something has to be done about the hitting so that is an “undesirable activity.” She should have as little interaction between you and her as possible, it seems to be working here at school for me, but not for Paula. I’m glad that Sam is big enough to fight back but sorry he has to.

December 3^rd, 1998:  L has been very scary today, very defensive and didn’t seem to understand when we talked to her, didn’t eat lunch, she hit a girl in PE and pulled her hair, noticed a lot of nail biting, teeth grinding, and some staring episodes. 

*December 4th, 1998: I’m afraid it is probably all the medicines she’s taking that is making her so crazy. She’s still on her antibiotics for sinus infection so that adds to it. We meet with doctor in early January and I talked to him this week about all the problems. He feels it’s all the drug interactions and wants to give it until our appt, then we will talk seriously about the implant. Keep letting me know about any staring or any strange behaviors. If it gets unbearable, let me know and I’ll call the doctor. It’s been so hard, I know. At home I try not to mess with her, she’s better off if I just let her be (I hate that, but what else can I do?).  

December 16^th, 1998:  Quiet today but very impulsive, unzipping pants, chewing headphones, cut up set of flash cards, and colored on everyone’s pictures.

January 12^th, 1999:  L was really shaky today, I’m not making any demands on her.  There was lots of hitting, starting on the bus.  I’m interested in hearing what the doctor thinks about all of this, let us know.

January 14^th, 1999:  Wow!  It has been a day.  I finally just kept her by me and held her hand.  Bless your heart; I hope you got some rest today.  She was calm when we were working on the computer, but rest of day has been in high gear.

*January 15th, 1999: Elaine, sorry I haven’t written too much lately, as you can imagine it’s been a little hectic! I’ve got Lauren back in pull-ups because for now it’s just one thing we don’t have to mess with. Next week we will be out a couple of days. She’s having another MRI and EEG to check for any changes with this most recent regression. 

“So please excuse the tears that fall when I look at you sometimes; I’m only crying for the dream that left me years gone by.” Poetry and writing were my therapy….my escape….my medicine. Expressing myself in this way helped me deal with many of the emotions and questions I had regarding everything going on with my little girl. One of those questions running around in my mind was; where do we go now?  Now that we know the Truth what do we do with it?  How do we follow the road to happily-ever-after now that it’s broken? I just knew I had to do something besides shedding tears and blaming myself.  I had to pick myself up for the sake of my baby boy and my little girl, they needed me, and they needed a mother that was there for them.  I confess that I swam in a sea of self-pity again for months after her diagnosis, sighing “woe is me” many times. I secretly wished she had some kind of physical handicap or Downs Syndrome or something so people would feel sorry for me and actually “see” her disability. I sat behind the steering wheel with images of driving into a tree somewhere and just ending all the pain.  I had visions of my hands around her neck……Yes, I’m admitting it, those thoughts crossed my mind plenty of times; I’m not ashamed to reveal them, but it’s what I did later that defines me now, not those thoughts or visions.

I couldn’t be the ONLY mom going through this, surely there were hundreds, thousands, maybe more and I wanted to somehow reach out to them. Were my feelings the same as theirs?  Did they live with GUILT and did they cry out when faced with the Truth?  Enough of the self-pity, I made myself tie yet another knot in my rope and I went searching for ‘the others.’ I learned that there were many parents out there, just like me.  I found a home with the Epilepsy Foundation and started a support group in my area so I could meet them.  I was  excited about this new adventure and it occupied my time and my mind.  I was finally thinking about something other than MY problems and I met some wonderful people who helped me discover where the broken road can lead you. Sometimes when faced with a challenge you have to take a leap, other times a step will do just fine.  This was just another step.

Helping others became my new mission.  Nobody chooses my destiny for me; I choose to make my own. The next few months of our lives were a little better despite behavioral setbacks and continuing seizures.  Maybe I was coping and understanding things better, but they seemed better.  My questions of who would love and accept my little girl were answered every day as she walked into the doors of her school.  Her teachers continued to make small strides with her and she was learning to read, write, and behave more appropriately. Her brother continued to amaze me; talking and walking earlier than the ‘norms’.  It was a better time and I started to realize that my attitude was greatly influenced by my thoughts, so I tried to wake up each morning looking forward to the day and not dreading it.

Things didn’t miraculously change all of a sudden, don’t get me wrong. It was still a crazy, hectic, insane life.  There were two kids in diapers, daily medications, those awful seizures, living paycheck to paycheck on one salary, and trying to stay positive from sun-up to sun-down.  It was a chore.  I still kept many things to myself and put a smile on my face whenever I was around others.  These were my problems; I’d deal with them on my own and not burden anyone else.  Even during support group meetings, I listened to other parents share their stories of grief and hardship but I kept mine to myself.  They don’t need to hear my problems; they have enough of their own, and so on.  GUILT was still managing to keep me down. But, at least now I was building a network of support. Just knowing that there were others out there with similar problems helped me make it through many of the bad times that were still yet to come.

Journal Entries: 

August 17, 1997:  It was an OK weekend. You were a little more irritable and your Ritalin took longer to kick in but we said our prayers tonight and when I asked you who you loved you said, “Ms. Grove, Ms. Josey, Ms. Stephens and Ms. Cotton.” I thought you were going to say mama! You also said, “I can’t hear you, use your words.”  You love your teachers. 

September 3, 1997:  Well, you’ve been sick lately so we went to the doctor but he couldn’t find anything….but you are on antibiotics again. You have been difficult, very hyper, jumping around, knocking things over. You put your face in front of Sam’s swing and got a fat lip and scractches on your face. 

November 20, 1997:  You were up early this morning and wound up tight! You’ve been sick again and we have had lots of bad behavior (climbing on the table, grabbing things). The doctor gave us a new medication called Tranxene to use to prevent seizures while you are sick. Every time you are about to get sick, you have a seizure and when you have a temperature. But, this medicine is supposed to make you sleepy, of course you fight it and you’re hyper. 

December 1, 1997:  Wow! What a long weekend and Thanksgiving was quite a trip! When you weren’t stripping or sticking your hands in the pumpkin pie, you were on top of the kitchen table with your hands down your pants singing the Aggie song at the top of your lungs! When Nonna and Gpa left they had big smiles on their faces. Probably happy that they were leaving! I just plopped down with a glass of wine!

May 1, 1998: I haven’t written in so long! Your brother is 2 years old now. We had a big party with 20 people for him and Jake in the backyard on his birthday. You really were good and you just kept to yourself most of the time. You would blow bubbles and walk around the yard singing Barney songs. You are still riding horses and you love it. We were there yesterday and you had a seizure. You were getting hyper and started grinding your teeth and walking around the stables. It lasted about 20 minutes. We took you home to get the valium in you. I’ve been going to conferences for the Epilepsy Foundation and I started meeting some other parents that have children with seizures. So, it’s been pretty busy around here. I’m even going to start working at Wal-Mart in a few weeks. Our neighbor is the manager there and he is getting me a part-time job in the shoe department. It will be good for me to get out of the house and I will make some money so we can do more things and pay more bills. I hope you will be good for your daddy. That’s the only thing I’m worried about!

I guess the hardest things about hearing the “R” word were the visions I had in my head of people I had seen with mental retardation and those visions weren’t pretty.  The dreams I had for my little girl were NOT going to come true.  I spent years trying to hold it together thinking that once the seizures were under control our baby would flourish. But, those dreams were definitely gone now.

That’s what I was thinking and I know it sounds horrible, but every parent feels that way at first, I know they do.  Who seriously wants this for their child?  Who seriously thinks this is a blessing? Who seriously wouldn’t want it to be different? I had dreams of seeing my little girl in ballet class and walking the halls in high school hand in hand with a young boy.  I even had those visions of her standing in the aisle on her wedding day, scared and excited to start her new life with someone she loves.  But the sad truth was, my little girl wasn’t going to experience any of those things; and that wasn’t fair. I was scared for her. I was petrified for her and what the future had in store.

The world can be a horribly unfair place for someone with imperfections, people don’t understand enough yet. People also make assumptions. How many times have you heard the saying “the apple doesn’t fall far from the tree?”  Was my daughter’s label going to impact everyone in the family?  That’s a selfish thought, I know, but it’s a real one. How was this going to impact my little boy? Was he going to be teased and have to spend years listening to people talk about his ‘retarded’ sister and say the same horrible things about him? Would he be able to handle it and would I be able to handle the looks and comments from people that didn’t know any better?

So, how was I going to handle this Truth?  Get over it, just accept it and move on…… I know that’s what I should have done, but hearing that word was like a scarlet letter on my little girl’s chest and mine too for the entire world to see. Who would love her?  Who would accept her?  Who else besides her family would ever love her? Who else except that young Boy and Girl that had started out years ago with all the best intentions?  Every time I looked at her all I could see were the end of my dreams for her.

When I Look at You

When I look at you I think about the way things should have been. When I look at you I think about the ways I must have sinned.

A beautiful child with an imperfect mind; a young mother’s dreams each day unwind.

There are days that pass without any tears; but more often than not the pain reappears.

With daily reminders of the way things ‘should’ be; in the faces of young girls growing happy and carefree.

When I think of you I wonder what the future has in store; a future so uncertain it pains me even more.

I used to dream of pom-poms, of ribbons and of curls, and all the many things that go with little girls.

That dream is gone and in its place is a future I’m unsure of; the path that I’m now taking is both frightening and unheard of.

When I look at you I also wonder why this has to be; why can’t someone else out there be better for you than me?

I haven’t always done my best,

I haven’t always wanted to.

I haven’t always shown it,

But deep inside I’ve loved you.

I know that with each passing day, I’ll find the strength I need,

To see you through your unique life and help you to succeed.

But please forgive the tears that fall when I look at you sometimes.

I’m only crying for the dream that left me years gone by.

We all deserve to know the Truth, right?  I’ve heard it said a thousand times that the Truth is out there.  Sometimes you have to search for it yourself and then be ready for it when you find it.  I was ready to know the Truth about my little girl because now I knew what it was like to have a child that followed all the textbook norms and was ‘typical’.  My parenting skills didn’t cause my daughter’s issues because my baby boy was just fine in my care.  So, what did cause her delays?  Both Boy and Girl wanted the answers and were ready to really “hear” what the doctors had to say.  Bring it on, we can handle anything, haven’t you seen what we’ve already been through?  Guilt get ready because the “Truth” shall set you free!

“So, what is it that you are looking for?  What are you hoping to gain from your visit today?” Those were the words we heard as we sat in the doctor’s office weeks after having our daughter evaluated by a team of specialists at our own expense.  I said we were ready for the Truth and that meant a second opinion from more professionals.  We weren’t unhappy with the medical care our daughter had been receiving; after all she was being seen by a neurologist and a developmental pediatrician and we respected them both.  But, we wanted to hear the words that they never said to us.  We knew that she wasn’t going to catch up and be fine. We knew she wasn’t just ‘delayed’ and we definitely knew that it was more than just seizures. So we went searching for the answers…..and we found them; “Your daughter is mentally retarded.  That means that she is functioning mentally at half her age.  She will always be that way. She won’t go to college or become a doctor, she probably won’t get married and she won’t have a family of her own, but she will graduate from high school, learn to do basic math and have some reading skills.  She’ll need help when she’s an adult and things like dressing, bathing and working will be hard for her to do independently. But, you don’t know what she’s capable of, so keep your expectations high, she might surprise you. Every child with mental retardation is different. I know you’re wondering how it happened, but the truth is that most of the time there is no reason. We really don’t have a way of finding out that information for you.”

Boom! There it was…the Truth….no doubt those were hard words to hear but we needed to hear them. I felt some relief and just kept thinking; thank you, thank  you for your honesty and for finally saying what it was we had been wondering for a long time now.  Yes, those two stupid words hurt when you first hear them, but that’s what it was……..mental retardation.  I remember it really didn’t sink in until an hour or so later when we were sitting at a restaurant after meeting with the doctors. I felt a huge lump in my throat and I fought hard to keep myself from crying. Why was this happening? Boy was there for me once again and he sat quietly with me as tears came down my face right in the middle of that busy restaurant. We didn’t have to speak a word to each other. We just looked into each other’s eyes and held hands. I could see he was feeling the same things; how and why did this happen to our little girl?  The doctors couldn’t answer why, only that there were many reasons for a child to become mentally retarded; maybe it happened during conception, or while in the womb, or maybe during the delivery; maybe the years of seizures and medications caused it.  We didn’t know, well the doctors didn’t know and Boy didn’t know, but I knew in my heart that it must have been something about me; it must have been something I did; I must have been imperfect in some way. Welcome back Guilt, didn’t you hear that the truth would set you free? Why are you back and why do you insist on ruining my life?

Even though I found a reason to go on each day, it was still so, so hard. My little girl wasn’t getting any better and soon those horrible seizures came back with force. This time they changed their appearance a little bit, perhaps because Reality and Guilt have a sick sense of humor but whatever the reason, it was awful. Instead of the typical grand-mal type, her seizures were manifested now through staring fits or odd behaviors that lasted several minutes until she would go into a full shaking, tonic-clonic seizure.  Sometimes we knew one was coming, sometimes we didn’t.

Our world changed again in an instant and we were back to doctors’ appointments and medication changes. It was just as scary as it had ever been.  She just wasn’t the same little girl; her eyes were blank, her stare cold, and her face as pale as porcelain.  She was biting and chewing on things worse than before and she seemed to regress in many of her skills.  She was lost, a little girl uncomfortable in her own skin. Her doctors requested more tests and then informed us that she was probably having hundreds of seizures every day that we weren’t seeing. We all started obsessing about every little thing she did waiting for signs that a seizure was coming. Her teachers had the nurse on speed dial and worried on a daily basis because they were concerned for her just as much as we were. What must her world have been like with all of those ‘interruptions’ and losses of awareness? What horrible things were going on inside that little girl’s head? Again, all I could think about was when was the happily-ever-after that Boy and Girl wished for ever going to happen?

School Journal Entries (Elaine Stephens and Maggie Grove, Miracle Worker #2):

August 22^nd, 1997:  Seizure began at 2:00 when she grabbed a green marker and just started scribbling on the table, then within a minute the seizure started.  Ambulance came at 2:15. I now have a phone in my classroom.

September 5th, 1997:  Was “out of it” this morning. She has had several petit-mal seizures this morning. She was better in the afternoon. Had two accidents today. Her wet clothes are in the bag. 

October 17^th, 1997:  It was a hard day for her, lots of hitting and pinching herself and us, very non-compliant all day.  When I took her to the bathroom she kept hitting herself in the head and telling me “L hit herself, look”.

October 21st, 1997:  We’ve stayed close to her as we are seeing the behaviors we see before seizures, quiet, running away, biting self, defiant, compulsive. She had to come back from Pre-K for singing the days of the week loudly during ‘story-time’ (however, I think we can master her objective for sequencing the days of the week).

November 3^rd, 1997:  Quiet today, especially at lunch.  She had to come back from Pre-K classroom because she wanted to take her shirt off.  She came back with me and we practiced keeping our clothes on and I did the best!

November 5^th, 1997:  She told Maggie that she had to go potty, took her several times and nothing.  Then while outside for Pre-K recess she pulled down her pants and went right there.  Other than that it was a good and compliant day!

November 20^th, 1997:  Wow, we can tell she doesn’t feel good.  She alternates between laying her head on her table and being a monster.  She got away from us at lunch.  We saw 5-6 little stares before lunch.

December 12^th, 1997:  Seemed more oppositional today, especially in the pm.  In her Pre-K class she tore up materials, hit and bit herself, banged her head against the wall, threw toys and wouldn’t pick them up.  It was a pretty rough day, hope your weekend at home is better.

December 15^th, 1997:  Well, the mall trip was a disaster.  I was late getting there and Maggie already had them back on the bus, so I stayed with her so the other two students could go back inside.  Our little girl was amazing, she pulled down her pants and Santa’s beard, stomped, yelled, bit several kids and herself.  It must have been wild.  Bless her heart, I don’t know why being sick affects her behavior so negatively. 

January 7^th, 1998:  Wow!  She messed in her pants and wet her pants, got her poop out (to mold it I guess).  She has been calmer without that medicine but she still looks at me while she calmly destroys my work.  Oh well, she worked for a while today on her Language Master, colored shapes, and practiced cutting.

January 27th, 1998:  I guess we’ve been having the calm before the storm. Today we had a lot of defiance, biting and scratching. However, she handled the potty by herself with verbal prompts and she figured out how to use the scissors and has cut paper every chance she got!

February 10^th, 1998:  Maggie has requested that L get her nails trimmed ASAP because her hands look like she’s been in a cat fight! She ran from Maggie after pm recess.

April 16^th, 1998:  A little rough this morning-noncompliant.  Tried to bite Maggie and couldn’t sit in a chair for her five-minute time out so had to stand with me and hold my hand. We are running out of ideas of what to do with her during this hard time, but we won’t give up trying to figure it out!  Hope you are doing Ok.

May 13th, 1998:  Found a movie in PreK that she liked called “Wee Sing”. She enjoyed digging in playground pebbles this morning. We did a little tune-up today, she made a mistake and told me “shut up” when I told her to pick up some cards. She later got upset with ChiChi for crowding her and started to bite but changed her mind and pulled her hair instead.