Dr. Suess

"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"

Sunday, September 21, 2008

The assignment ..

After a few days of thinking about it ... and a couple of emails asking me to .. I've decided to post the essay I wrote for my developmental pysch class. The assignment was to write about where I was 10 years ago ..emotionally, physically and socially and how I've changed or not changed. The ironic thing of the choice for the 10 year mark was what a pivotal time that was in the life of my parenting of a special needs child.

His Laughter Taught Me
In August of 1998, my youngest son was six and one half years old, my oldest son was almost nine, my husband was forty two, and I was thirty three. The obstacles facing my family were, in short, overwhelming. I was exhausted and at the end of my rope and feeling like I had no more resources to turn to. What made things seemingly worse was having most of the professionals and the support20systems in my life telling me that I was handling things well and doing everything right.
My youngest son, Benjamin, had been diagnosed with PDD-NOS, a mild form of Autism, Auditory and Visual Processing Disorders, an IQ of 75, OCD and a tic disorder. He also had an immune deficiency so he was frequently ill. He had weekly Occupational Therapy, Speech Therapy, and Physical Therapy at Children's Medical Center (and had been in all three therapies since he was nine months old). He had Pediatric Pulmonologist, Neurologist, Gastroenterologist, Psychologist, and Developmental Pediatrician. All of these were in complete agreement with both medical and developmental diagnosis and treatments.
We had taken him to the school district when he was three years old for Special Education Pre-School and they gave us a hard time. We had to take them to due process to get services. He spent two years in a due process ordered IEP preschool, and one year in due process ordered Head start. We then pulled hi m out in order to place him into kindergarten at The Little Light House, who fully agreed with all of the doctors and therapists that were treating him and his diagnosis'.
We moved him back to public school for a second year of Kindergarten. The school district said that this child of ours had no issues what so ever, that he was fine. He was a delightful child and his only issues were maybe some parenting issues, and that if we controlled his behavior better his "learning problems, (if they exist)" would go away. We tried to fight for an IEP for kindergarten and were not successful. At this point it is the beginning of first grade, August of 1998, and they are, once again, refusing Benjamin appropriate services. The only issue they would admit to him having was 'emotional immaturity' and that was 'not an educational issue'. Therefore, they did not have to serve him.
As his mother, I desperately wanted to believe them. I wanted them to be right, tha t he was simply emotionally immature and my parenting was bad. I wanted it to be that simple! I became angry that they were the ones across the table telling me that my child was delightful, a joy to be around and that there was nothing wrong. I was forced into the unenviable position of having to tell them that my child was not OK. That he had weaknesses, that he had trouble learning, that he had difficulties, and that he was not a perfect child. I felt that it should be the school telling the mother that their child has struggles and it is every mother's right to say "but no, you don't understand, my child is lovely!" They had placed me in the position that no mother belongs in: to recount her child's faults ad nauseum.
Benjamin's diagnosis of PDD-NOS brought with it s ome significant sensory issues, social awkwardness, and an extreme lack of impulse control. The sensory issues and impulse control were the things that had us the most concerned. At one point in time, the child psychologist had his impulse control estimated to be equal to that of about a thirteen month old infant. Imagine a one year old child in a six year old body. It is a lot to keep up with and almost impossible to keep safe. He would see something he wanted or somewhere he wanted to go and take off without a second's notice. We had to be able to read his body language and facial expressions in order to second guess what he was about to do to keep him from injuring himself or endangering another child.
Added to the mix was my own health issues, I had undiagnosed lupus and diagnosed Myasthenia Gravis. Myasthenia Gravis is a neuromuscular disease causing weakness and muscle fatigue of the voluntary muscles. The more the muscles are used, the weaker they get. I sometimes needed help getting dressed, running was impossible, I could not climb a flight of stairs and there were many times I could not properly chew food and would often choke on it. Double vision was common because my eyes were so fatigued. I frequently wore leg braces called AFOs (ankle foot orthotics) to keep my leg muscles strong enough to function. Running after this young, active child was a physical impossibility. Reading his body language was an absolute necessity for prevention.
During the year of 1998, I was hospitalized two times. Once for nine days receiving a treatment called plasmapheresis, and once for 17 days. Both for Myasthenic Crisis. I, myself, in addition to taking Benjamin to his constant doctor appointments and therapy appointments, was constantly going to see my own doctors and in and out of the hospital. Each of those doctors were only there to help the patient in front of them. My doctors there to see me, Benjamin's there to see him. My mental exhaustion built as I couldn't seem to get anyone to understand that all of this was effecting all of my family.
In the meantime, shortly after school started that year, while homeschooling my then almost nine year old son, Samuel, he developed a cough that would not go away. Nothing would help. Xray's taken, and medications tried and one day the pediatrician looked at me, went kind of pale and with a very quiet voice said "Peggikaye, this is Tourette's". The pediatrician and I then realized that the tics and OCD affecting my youngest son had been overlooked in my gifted oldest son.
A month later, my husband, who had polio as a child, was becoming weaker and weaker. Post Polio was a term we were becoming more and more familiar with. His Scoliosis and kyphosis were worsening causing restrictive airway disease, and we learned that eventually the scoliosis will do one of a few things; it will either cause the lungs to fail, cause an organ to rupture, or it will twist the spinal cord. One way or another, the doctors told us, they felt he had less than a year to live.
Again, these doctors were there for my husband, or me, or Benjamin, or Samuel ...but no one seemed to be able to deal with all of us. I felt like I was lost in a never-never land and everything kept getting worse. I felt like I was failing at everything and nothing could ever go right again. My body exhausted, my brain unable to function, and my body totally foreign to the athletic body it had been as a teenager. No one seemed able to help me, and anyone who tried just told me that for what was wrong with us, we were doing absolutely fantastic, and Benjamin was 'delightful'. 0A
One of the most desperate moments I can remember, middle of the winter, and Benjamin was in his bedroom with his brother and suddenly Samuel screams. Benjamin had jumped from the 10 foot window of our mobile home, and was running down the street stark naked. I ran out the door to go after him, it was raining, I'm myasthenic. And I fell, flat on my back. Samuel ran and caught his brother and came back and called 911. Afterwards I was taken to the emergency room to find out I was somewhat OK. My heart was broken and my brain was terrified as I realized I could not protect my child and I had no idea how to teach him the social impropriety that he had just committed! We had an appointment the next week with the child psychologist who did not seem alarmed by what had happened, he was after all, autistic. She discharged us from her care with a happy pa t on our backs, encouraging us as to what great parents we were and telling us that "Benjamin is where we try to get our patients to be in therapy."
Devastated, I went home. I'd just been complemented, but I was terrified. I'd just been told that this child I could not protect, nor teach, was exactly where their children were supposed to be. That answer was not acceptable. We still had no services at school and Benjamin was miserably failing in the first grade with the teacher sure that if he just applied himself he could learn his ABC's that he should have learned in pre school, (but it's not a learning disability!).
We received a letter from the State of Oklahoma. We'd applied for services through wavered services when he was about one or two. He had finally come up in the waiting list and was time to be tested to see if he qualified. This was a relief. He would FINALLY be tested by an independent tester. Someone not involved in the interest of either his educational needs nor his=2 0medical care. We would get a finite answer as to any real problems that he had. I had managed to talk myself into believing the school district. A bad move emotionally, but I did it.
She invited me to watch the testing (not something I would ever recommend) and my heart sank as I watched my son struggle more than I ever even realized he struggled. The results came in and she carefully went over the tests with me. She confirmed, not the school districts ideals, but the medical communities diagnosis. My worst fears and my heart shattered as I heard "Autism", "Tourette's Syndrome", "Obsessive Compulsive Disorder", "Auditory and Visual Processing Disorder", and "IQ 75". She also listed a few other gems that would make life difficult for my precious little boy. For strengths, she said, without hesitation, the same thing everybody else had said about my son: "Delightful".
That Sunday, I was singing in the choir at church and my heart was broken. I left the choir loft and headed to the bathroom. T he children's ministry was in the gym and I heard Benjamin laugh. It was a laughter that went from his toes to God's ears. It caught the attention of every single person in the room, from child to adult and brought a smile to their faces.
Immediately I knew: that laughter was my child. Not the test scores, nor the tics, nor the struggles, nor the diagnosis', nor the fights with the schools, nor even the doctor or therapy appointments. Not IQ or autism or impulse control or anytng else! THAT laughter was saying my child and my entire family was going to be OK.
I went into the church sanctuary and wrote the following poem:

A Mother's Heart
Every mother had Dreams,
Of a Child perfect and whole.
Every mother has Hopes,
For perfection, body and soul.

They told me you’re not perfect,
Sweet loving child of mine.
They told me that your learning,
Is taking too much time.

They tell me that your tests came back,
Showing problems and low scores.
They tell me that you have to struggle,
This hurts me to the core.

Every mother has dreams,
They tell me you don’t fit.
Every mother has hopes,
They say perfection you won’t hit.

But they don’t see what I see,
The smile that lights your face.
But they don’t hear what I hear,
Your laughter reveals God’s grace.

They don’t see what I see,
My child loving and whole.
I have hopes and dreams,
Because my child you are a gift from God
And you have a PERFECT SOUL.

© Peggikaye Eagler

Today, ten years later, in August of 2008 my son Benjamin is 16 and one half years old and through therapies, hard work and persistence - the autism diagnosis was removed, his IQ is testing at 98 and while he still has significant Processing Disorders, Sensory Integration Dysfunction, OCD, Tourette's Syndrome, the school did give him an IEP beginning with the second grade and continues to today. Today, his strengths include, not only being delightful, but Social skills are consistently listed as well as leadership.
My health, while not good is improved. I have had a total of twenty seven hospitalizations and fifteen surgeries; although it has been almost two years since my last hospitalization. The lupus has caused significant arthritis in my hands and my chest. I have=2 0tremors, headaches, and vertigo also because of the lupus. These tremors effect my fine motor skills which effects both my hand writing, and I used to be an interpreter for the deaf, but I no longer have the dexterity to use the sign language necessary to do so.
As I've aged, I've had to give way to using reading glasses to see the print on the page. I still struggle with double vision because of the Myasthenia Gravis, but that is the most frequent and most bothersome symptom. The severity of the weakness of ten years ago, is only there if I get too sick or wear myself out (in other-words, it's usually self imposed!).
My husband, who we were told just ten years ago that we should not expect him to live through the year, is still here and doing quite well. A year ago, we almost lost him, and it has taken him a year to recover. But, recover he has, and at this time, he is almost as well as he was in 1998. Surprising not only us, but any doctor w ho has ever laid eyes on him.
What has changed most in me, changed the day I heard my son's laughter, it took root and has taken on many forms of new strength and growth as it has branched out. Hope, success, laughter, and the realization that no matter the struggles the Eagler Family always had more laughter than tears, more hope than fear, and more joy than sorrow. That kept me fighting when I had no fight left, and so ten years later I have helped my family get out of dilapidated mobile home into a House from Humanity for Humanity, home-schooled my oldest son for eight of his school years, watch my fifty-two year old husband fight his way back from an ICU bed and out-live the 'year' by more than ten and realized that I loved my life and I don't want to see another mom as desperate as I was ten years ago and enrolled myself at the age of forty three to start a very long journey toward a Ph.D in Psychology to help not only children, but FAMILIES effected by issues such as autism, OCD, Tourette's Syndrome, developmental delays, processing disorders, Downs Syndrome, or whatever chaos life throws at them.

Thursday, September 18, 2008


Today I realized that my body is yelling at me. Rather loudly. The week before school started I came down with a rather nasty cough, fever ...yada yada yada ... it took 2 rounds of antibiotics to get through it. I'm still .. STILL coughing. I can't talk very much without resorting to coughing. I wake up at night ...coughing. It's not waking up doing my normal MG-- choking --on --my--own-- saliva -- choking ...but coughing! Sigh. It's not bad enough to go back to the doctor or another round of antibiotics. It's just a residual cough that sometimes hangs on for too long when a body has a hard time ridding itself of an infection. Since I'm not relapsing, the assumption is that the infection is gone ..and it is the residual cough.

The first week of school, first round of antibiotics, I started to improve, then within 48 hours of being off the antibiotics I was back to sky high fever and cough worse than the first time. THAT ...was a relapse of the infection.

This ... just won't go away ... cough hack cough hack cough hack.

I sound like a lifetime smoker.

Seriously. It is that smoker's hack. But I don't smoke.

The MG is playing tricks on me ...knees buckling while I'm walking, eyes going double about twice as often as they normally would. To be expected with the increase of activities and use of muscle.

The idea when going back to school was that I would make adjustments in home activities ...to allow for increased at school ... only ... I didn't.

So on top of adding hours and stress of school ... I kept up my load at home.


Soooooo as of today, I'm putting in a new plan of action. Some intentional eye rest every day, not on the computer, not watching TV, and not necessarily sleeping, but ...closed eyes. Making sure that I wear my eye patches if I'm studying and my eyes are tired ...taking a proactive role in taking care of my body. I've got a long road to hoe ...and I have put the proper care techniques into the pattern of my DNA NOW. If I wait till I crash and burn, it will be too late.

I do not want to go crash, burn, recover, crash burn recover ... that is my normal cycle. When I don't have school, that might have worked to go to bed for 3 or 4 days ..but I can't afford that anymore.

I'm having some trouble sleeping, but I am trying to make sure I'm resting anyway. That is making a difference.

The biggest issue with school is my struggle with algebra. OH BROTHER OH MY!

If only Mr Biegel were her to help me now! (7th grade math teacher, my favorite all time teacher ... sigh)

This last week has been one of the most stressful weeks of my life. My mom totalled her car on the 10th, my son totalled our car on the 11th. Mom's was her fault. She shouldn't have been driving because of a right leg injury and was driving with her left foot. She pulled into a parking spot at the public library and went to step on the brake and instead stomped on the gas.

She ran over a tree, over a bike rack and into a light pole. Thank God there were NO children nearby!

Samuel's accident wasn't his fault, exactly. He was driving on the expressway, and got cut off by a wreckless driver going 80 mph in the heavy rain (not just heavy rain, heavy wind and rain ala IKE). The truck cut him off and he had the choice of veering off away from traffic or into traffic. When he chose to go away from traffic, he lost control of the car. He hydroplaned, turned a few 360's and hit the retaining wall (solid cement) backwards ... facing traffic coming at him full speed at him on the freeway.

The not his fault exactly .. simply put is .. a more exprienced driver (IE ..Adult) would not have been in that lane .. and one of the things he said, very frustrated, almost in tears of defense was

"but DAD! I wasn't even going 65!"
(driver's ed drilled into the kids ... when it's raining .. don't go 65, as if that's the magic number to keep you from hydroplaning?)

The reality was ... he had no business being in that center lane ... and he certainly had no business being in the center lane NOT going 65 mph ... and if the weather conditions meant he couldn't go 65 ..then DO NOT go into that lane!

Personally, I think a teenaged driver should stay out of that passing lane! They just don't have the experience for it!

Long story short, he didn't have enough driving YEARS to know all of this information ... he does now. I didn't know it at 18 ... I didn't learn that stuff in drivers ed, and no one told me. I learned it through close calls and watching ... I got lucky. My son, did too...just not as lucky as I was.

I'm blessed that all we lost was our car! I get sick when I think about my son plowing into that wall! I want to strangle the man who callously cut off a teenaged driver going 80 mph in the rain ...just what was so important that you had to risk my sons life?

Monday, September 08, 2008

Psychology Student

I was introduced today as a Psychology Major, by a professor.

Suddenly, it's real.


Still don't have my Humanities test grade back. :o( Not happy about that.

Got my paper with feed back, from psychology class. It made me smile.

Thinking of posting it here, but not wanting to get into the habit of putting my blog readers through the torture of having to read all my writing assignments. ;o) Still debating on this one.

Tomorrow I get (hopefully) the results of algebra test. I am finally starting to breath normally after thursday's panic attack.

Saturday, September 06, 2008

It's Saturday

I've spent a good part of the last 24 hours sleeping. Although, I did go to Macy's and got 2 pair of pants with pockets. I learned that a majority of my pants/capri's/skirts ... had no pockets. ... didnt' need them when all I do is go to grocery store/church/doctor appointments.

I definitely need them at school !!

This week at school has been quite the week. Monday, a holiday did nothing to make it seem shorter! I had a Humanities test on Wednesday and an Algebra test on Thursday. Because the Humanities teacher did not have the tests back for us on Friday, nor posted on blackboard (electronic webpage where our grades are supposed to be posted) I've got no idea how I did on the humanities test.

It will be Tuesday before I know the Algebra test. Our first homework was due on last Tuesday, that wasn't handed back in before the test, so I wasn't sure how I'd done on that before taking the test ... yuck

The humanities test was more difficult to study for than I'd anticipated. The teacher, who is nice, but has more of an artistic bent to her mindset than I do, thinks on a totally different plane ...and I found her outline for the test difficult to study from.
At first, I thought it was *ME* and being out of school for almost 20 years, then showed my son ..and realized ...oh no! It's not me ... it's ..well ... it's the way she thinks and the way I think.

Unfortunately, we got the outline on a Tuesday night, and I figured out her 'outline' and how it related to the book ...the night before the test a full WEEK after recieving the outline!!! I spent HOURS trying to get seemingly random facts into my brain which actually were not out of order, nor random ...just ... she and I approach things totally different!! YIKES!

So, next test, I'll know!!! Hopefully, my familiarity with the Renaissance era will have gotten me through. The infuriating thing was not her study tools, nor her teaching ..nor anything but my blessed stupidity ... and breaking the first rule of test taking.

Extra credit ...was identifying a picture ... Couldn't remember the name, so I didn't stress, figured I'd get half credit for putting down the painter ... put down who I thought it was ... and wrote it down ..then thought ..nah.... it's that guy back there from question 3 ...... (who was not the right answer in question 3, but just there as a choice) ...so I erased MY gut instinct ...and ... wrote down the extra name from question 3 ...only
I was right the first time.

ARGHARGH ARGH ARGH... I have known since I WAS SEVEN YEARS OLD DO NOT ERASE YOUR GUT INSTINCT!!!!!!!!!!!!!!!!!!!!!!!!!!!

She threw me with a trick question, although I got it right. She asked about the printing press and what it did for the people of the renaissance. She had one question totally wrong, and then 2 identical answers. Except the year ...one year .. in the 1300 (important to church history) and one year in the 1400's .. my brain, having had lots of Bible/church history ... split in two as I tried to figure out ..which was which!

I answered correctly *whew*

Then came the algebra test. While I've been known to have a few panic attacks. I know few people with eating disorders who've not had them on occassion. Most of mine are in fact, food related, therapy related or the such. The last time someone actually SAW me have a panic attack ... I was about 21. I'm 43 .... I've since learned to pretty well internalize them (granted, the end result does some pretty good self punishment ...but still ...my panic attacks are not visible)

So Wednesday night, Don tries to help me ... and I'm in tears, repeatidly. He and I don't quite see eye to eye. He also doesn't understand that when he says "you're smart enough to get this if you'd just focus" that all that does is to serve to make me feel even more stupid than I'm already feeling for not understanding what I'm doing wrong and I really really really REALLY don't get this. His getting angry because I've just done 3 problems 'just like it' (um, no, they weren't they did not look anything like it to me, just because they did to him, did not mean they did to me) ...

Keep in mind ... I NEVER took algebra, not even a semester of it ... so it's not like it's been 30 years since i took it and I've forgotten it ... I never HAD it. I'm learning all of this for the first time. Pre algebra was in 7th grade ...and that my friends ...was a very very long time ago and I don't remember anything from it except that I had the best teacher in the world and that Russell Sellers was in my class and was the cutest boy in the 7th grade and he was my boyfriend and he'd picked ME over all the other girls.

That's ...not much to go on 31 years later!

So, I'm working Wednesday night going over something about distributive properties to simplify like terms. What I don't understand (in all reality ... I did not get it) is that I'm not solving an equation ...I did not know that. I really didn't. I'd done over 40 problems ..and through tears and frustration I can't figure out WHY I'm doing what I'm doing and why this is like this .... because it's not DONE ... (because I think to simplify something means to finish, to finish means to =) so ..why is it that when I get to 7y -14 am I not FINISHING it? It took me 4 hours to realize there was no realization that there was no '=' and I was not doing an EQUATION.

(no, no one had explained this to me)

So, I go to school early on Thursday and I work in the math lab, and I work with a math teacher ..who then frustrates me a bit as she tries to show me an 'easier' way with a principal I've not been shown yet (because she's assuming I'm retaking this as a review from not having had algebra in 30 years) and then she backs up and says 'oh forget that! ...

I started to go up stairs about 15 minutes before class and i could not breathe. I called my former pastors wife ...because I knew I could call her and ask her to pray for me and not only get prayer ..but not get 'my poor baby' or "i'm so sorry" or 'buck it up huck" or "suck it up cream puff" or "if you'd just pay attention"
but ... I'd get "ok, let's look at this for what it really is ....
step 1
step 2
step 3
step 4
and pray"

Which, is exactly what she did.
But while on the phone with her, I'm not breathing, or breathing too hard, with tears pouring down my face and I can't keep my legs under my feet and a lady comes up behind me and guids me to a chair. She writes me a note and says "I'm a nursing instructor, are you ok or are you having a panic attack? Should we call 911?"

I pointed to the panic attack. The next thing I know, I've got 2 people bringing me water and 2 wet rags, one's on my neck, one on my forehead ...all this while Carla is talking to me about my class.

She reminds me that this is all brand new information and I'm expecting myself to be able to solve trigonomotry and get straight A's because ...hey! I'm Peggikaye ... i should be perfect. Only, I've never been perfect, I just think everyone thinks I should be or I won't be accepted.
She reminds me that the worst that can happen is that I fail the test ... I show my work, every step ...and then the teacher can see what I'm not understanding ...and then he can help me.
Take my time. Do not be the student that has to be the best student in the class and be the first one done.

By the time I went into class, I could almost breathe ... almost. He handed out the test ...most people were done in 15 to 20 minutes. It took me 55 minutes. I cried several times in the test. I have no idea how I did ...but me... ms I hate showing my work ...showed every step I took to get to where I was going ...(he also said he'd give partial credit for work shown that was right even if the answer was wrong)
I did my best .....

He and I had many discussions these last three weeks ...about absolute value and things I'm having a hard time accepting ....

Carla told me that she won't believe that I can't accept those stupid things that 'just are' in math.
Just because ... she said that I accept things of God on blind faith all the time ...and if I can do that ...then I certainly can do it in the Math he created as well ... gee did she have to put it that way?

The severity of the panic attack has left me physically exhausted. I think it is what has left me emotionally worn this weekend. It has been well over 20 years since I've had a panic attack that severe. The physical fall out .. has been pretty significant .... Autoimmunity is worsened by stress and my body is paying the price.

I'm resting a lot this weekend ...caught up on homework and reading ....

I hope that Tuesday he's got the results so I can see ... .. ... ...