Dr. Suess

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

Monday, April 21, 2008

Time Marches On

I was looking through some old paperwork to find some information in regards for going back to school. I came across a "Personal Profile" that I'd written for my youngest son when he was in the third grade. (By the way, for any parent who has a special needs child, I highly recommend doing this, if you need more information, email me at Pearlsofaneagle@aol.com)

The year, 2001-2002 school year. It contained personal information ...who he lived with, pets and interests (Pokemon, animal planet etc) and what his personal strengths were. (Good moral values, respect for authority, being cute and funny).

It also included his weaknesses (poor social skills, inability to follow other's body language to get social cues such as personal body space, in ability to sit still, impulsivity etc, high frustration level.)

There was a section in the profile where I listed his Symptoms and Difficulties:
Easily distracted and frustrated
sitting still
blurting out what he is thinking
difficulty learning new concepts
short term memory problems
inability to express things that he knows.
needs constant re direction
OCD germ phobia
OCD handwashing
inability to adjust to transitions without assistance

I also listed a list of his tics from caused by the Tourette's Syndrome:
eye blinking; eye squinching; lip licking; lip twitches; kicking (hopefully no one is in his way when this happens) leg stretching; touching things;snapping; shoulder shrugging;neck rolling; and hand flapping are the most frequent.
Vocal (also known as phonic tics)
throat clearing; humming; coughing; cheek sucking;gulping; short burst sentences (usually making no sense whatsoever) such as "I am not a whale" or "my yeast is rising" They are usually short, and have an odd vocal sound to them. One from several years past was "Purple cows eat these on the moon"

I also had listed his medical and developmental Issues:
Bifrontal Lobe Atrophy
Arnold Chiari Malformation type 1 (both are mild brain malformations)
Hypogammagobulinemia (IgG immune deficiency)
they all interfere with his school attendence.
During the 2000 -2001 school year, Benjamin missed over 40 days of school, 10 of those in the hospital.

While bifrontal lobe atrophy is not a common issue, there are things that it is known to effect. The most common things it is likely to effect in the classroom setting are as follows:
abstract thought
problem solving
creative thought
coordinitated movement
generalized and mass movements
some eye movements
muscle movements
skilled movements
sense of smell
supplementary motor skills
physical reactions

I also included his food allergy to ALL dairy. the fact that it was a true allergy not a lactose intolerance.

The rest of the document consisted of ways the teacher could help him in the classroom, modifications that could help him to better adapt to both learning and social environments.

So here we are 6 years later, in the 9th grade and it hardly seem like I'm writing about the same child! Whose child was that? While there are area's that I can see that this is my child, there are many areas that I had forgotten just how difficult it could get with him.
(this, is a very good thing. My memory is how delightful he was)

His social skills are now his strength! He's going to be on a leardership team for the church youth group. He'll be in a leadership program at the school, and be the first child in special education to be included in this program.

His germ phobia is definitely manageable. It's there, hovering beneath the surface, but he keeps it in check with his own version of behavior modification. The handwashing he managed to deal with as well. He does have a few OCD issues that make life difficult, but when you let him know that they are interfering with others functioning, he catches it, and figures out a way to adapt.

In 3rd grade, adaptation was an impossibility ...in 9th grade, adaptation is his strength.

He can sit still for hours. Is one of the quietest in his classroom settings. The neurologist gave him thetest and he tested no where near ADHD. T.O.V.A. The culprit of his inattention and impulsivity is either the bifrontal lobe atrophy or OCD/TS and Sensory Integration Dysfunction or ...all of the above.

The progress he has made is nothing short of remarkable. We were blessed with a fantastic pediatric neurologist who Benjamin started seeing at the tender age of 2 months old when he had his first seizure. That summer brought terms into our lives such as "Craniosystosis" "Arnold Chiari Malformation Type 1" "Developmental Delay" and other words a mother never wants to hear uttered regarding her child.

Diagnosist proceedures such as MRI's, CT scans, nuclear medicine of all types, for both digestive and brain studies began in what seemed like weekly progression. Hospital stays were frequent and overwhelming.

Nine months old, my son was sent to a Physical therapist because he could not roll over, an OT because he had no fine motor skills to speak of, and a speech therapist because he could not eat solid food.

What mother actually thinks they'll have to teach their child how to eat?

The amazing thing in all of this ... the smile never left this child's face. The laughter never left his vocal chords. The determination never left him. He shuffled through diagnosis' consisting of mental retardation, autism and protein intolerance.

It is incredible to realize what this child of mine has gone through. This, this young man ..this gentle soul ..who stood by his girlfriends side to help her through the death of her father this past 2 weeks.

The baby in my arms ... with the crooked skull .. who'd have thought? I guess I did, even before I wrote the personal profile. The profile was written in 2001, this poem .. in January 2000

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


  1. What an inspirational story for every parent who has concerns about a child - and I know that much of his progress is due to his mom who wouldn't stop fighting for him :)

    P.S. How's the arm?

  2. Hi A.
    I'm a very strong believer in the 'working diagnosis'
    It A) gives you a starting place for therapy, services and where to fight for the child.
    and B) gives you an idea of what you're up against.

    I do not believe that a diagnosis, or a label (whatever anyone wants to call it) ever constrains a child ... it does not describe a child or limit a child. It simply provides a family with services (no school or governmental agency (department of human services, SSI etc) or Insurance companies will work without a diagnosis).
    and gives you a place to start.

    Diagnosis' should be fluid and open to change as the child changes.
    I've had a lot of questions about the autism issue ... do I believe he was 'cured' or why did we stay with someone who had mis diagnosed him etc ...

    No, it was a working diagnosis .. it got us started on the path to the appropriate services where we found out what was REALLY wrong (sensory integration)

    I guess ..it's that belief that is driving me to school.

    On the subject of my arm, it looks good .. it hurts like a stuck pig. No redness, no swelling at all. You can barely see where he bit me. Tonight, it hurts. Go figure.

  3. Hi! Wandered over here from Dream Mom's blog... (Gah, this is sounding like a spam comment.)

    Kind of off-topic, but have you checked out The Gimp Parade on Blogspot? The woman who writes it is on a ventilator, and she's great--witty and profound and... I suck at giving praise, but she pretty much de-mystified trachs for me. Come for the information, stay for the amusing observations.

  4. Hello Dreaming Again. Thank you for stopping at my site. I'd very much like to read what you wrote ( you referred to about your step dad) I didn't see an email for you, and there are 6 blogs by you..would you mind sending it to me? I would also like to ask you some things if you didn't mind, they would perhaps be of much help to a friend of mine. I hope you will contact me.

  5. Children have a way of evolving. I so agree with the "working" diagnosis pratice.

  6. Corinn, I used to go to Gimp Parade, not sure how I managed to loose the link.

    I have a good friend who lives on a trache. Don has followed her journey both before and after.

    It is a difficult decision.

    CA ... So glad we were able to connect, even if it was on this difficult subject.

    Deb, it's nice to have someone with experience agree and know it's not just my own hairbrained idea. *smile*