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.