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Monday, April 4, 2011

Life With a Learning Disabled Child:My Own Story

Nic today with his new wife Shannon
As with most first-time Mothers, the parenthood journey started long before the actual birth and encompassed a plethora of worries.  When my son Nicholas finally did arrive, kicking and screaming, I took my final cleansing breath of relief, without an inkling of what lie ahead for both of us. At that point in time, I was elated, high on the wonders of childbirth, my son’s tiny perfect hands and the ability to sleep, if only for a few hours when he was shuffled back to the nursery. My family and friends visited, we drank champagne to celebrate this incredible moment in time, and toasted in a new year and a new life. It was December 31st, New Year’s Eve and a wonderful day to be born.
When I returned to my apartment with my bundle of joy, life would never be the same. As a single mother, I learned quickly that everything had to be carefully planned, from showers to shopping; I had a new appreciation for Mothers everywhere and wondered if they ever felt as inadequate as I did.  To top it off, it seemed like whatever I did, Nicholas would not stop crying and although everyone kept telling me to “just relax, babies do cry” I could not just let him cry. His pediatrician assured me that he was fine, and that he probably just had a touch of “colic” a condition, by the way, that I still don’t completely understand. Nicholas was eventually put on a goat’s milk formula which did seem to agree with him best and I spent many hours rocking, holding, singing and dancing him sleep. It was the motion that seemed to be the most calming, with a quick cruise around the block becoming my favorite fussy baby fix!
To say that Nicholas was an active toddler is an extreme understatement. He was busy, stubborn and difficult to handle, doing best with a consistent daily routine and constant one-to-one interaction. He was always very social and athletic however, which was a plus when he entered daycare. There were concerns about Nicholas’ behavior though, and even at this age, his daycare and preschool teachers commented that he was frequently disruptive and defiant, especially during activities that required him to remain quiet, and pay attention to instruction. This did not surprise me in the least because I had the same frustrating experience with Nicholas at home. When it came time for Kindergarten, I was incredibly worried that he was just not ready, willing or able to comply with the most basic requests. In addition, Nicholas was not reading or writing, it was apparent that this was very difficult for him and he literally threw a fit whenever I attempted to review these essential skills!
Amazingly, he got through Kindergarten and part of First Grade with a few good friends and memories before the dreaded call came requesting my presence at a meeting with concerned school staff regarding Nicholas’ progress and placement. The condensed version: they suggested that Nicholas be assessed for placement in the district’s special education program, theoretically moving him into a class with 8 or 9 special-needs children,  located in a trailer on the same elementary school campus. Of course I wanted him to learn with more individualized attention, and so I agreed to the proposed plan, and so began the battery of tests for Nicholas and meetings for me.
Unfortunately, things got much worse after Nicholas’ move and in the years to come. He was questioned and teased relentlessly by his previous classmates and so Nicholas’ behavior became much worse. He became angry and more uncooperative as the positive social interaction that he once shared with his peers was gone, replaced by a boy who felt isolated and different.
He went from learning disabled to learning disabled with oppositional behavior, the initial official diagnoses was ADHD with ODD, or Attention Deficit Disorder with Oppositional Defiant Disorder. This changed over the years though, as reflected in numerous IEP, or Individual Educational Placement Reports. I tried to learn as much as I could by asking questions but I was told repeatedly to take the various diagnoses notes with a grain of salt as they frequently sounded worse than they really were to obtain sufficient funding. This only added to my worry however as these files were a part of Nicholas' permanent school record and identity. I felt helpless to do anything about it. The nightmare continued and eventually landed Nicholas in a private school that was about 40 miles away from our apartment. 
By this time, nearing the end of 5th grade, he decided that it was far better to be bad than stupid and after a short adjustment period, he seemed to fit right in, although I don’t know how beneficial this was. He was picking things up from his new classmates that made learning even more difficult and things at home impossible. Trying to work full time, drive Nic (as he now liked to be called) to school every day because he was embarrassed to ride in the little yellow bus and then set limits for an impossible and constantly testing child was taking a toll on me. The therapy sessions that Nic and I attended were not much help either at this point because Nic would not talk. He would just sit in silence, arms crossed and angry. I tried everything from behavior modification to punching bags on the porch.
But then, as I contemplated filling out an application for Wilderness Camp, Nic got to know a teacher at his school named Greg who seemed to share Nic’s love of sports. One of the problems with many privately run special education schools and programs is that they don’t have a strong focus on sports, perhaps understandable due to a lack of funding. As Nic’s friends and peers were playing High School Football, he watched from the sidelines, wanting to be part of something he always loved. Greg understood this gap in the system and made an effort to start a Sports Program at the school, and challenged Nic to help. If you don’t like something change it, and so they did. Having Jerseys made and arranging practice and game schedules, they succeeded in starting something that Nic now attributes to helping strengthening his body and mind, allowing him to make it through an educational system that didn’t seem to understand him.
Nic continues to struggle academically but after high school and as he began to mature, his attitude improved making life much easier than it was before. He still avoids everyday tasks like filling out forms, and situations where he may have to read out loud or be put on the spot but his love of sports, exercise, health and animals has reaffirmed his self-worth. He is without a doubt, still a work in progress who will never forget his journey. Last July, 2010, he married his girlfriend Shannon, who is, ironically, a 5th grade teacher who specializes in special education and family counseling. Nic is working as a mechanic and enjoys coaching football and basketball at the school Shannon works at. Although I don’t think I’ll convince Nic to further his education any time soon, he is a relatively happy individual and I am very proud of how far he has come.
This certainly is not the end of a happily-ever-after story by any means, but I think it’s a message to us as parents and citizens of society that one size does not fit all. One must feel hope and a sense of accomplishment. When we get out of bed in the morning, if there is nothing to look forward to then our performance will indeed reflect that lack of purpose in all that we do. For young people especially, they are all so different and must be allowed to learn and express themselves in many sometimes unconventional ways. We must be able to tune into and further develop their strengths as well as diagnose their weaknesses. As neighbors, friends, family and parents--children are the future and we must act as advocates, sometimes finding a hidden purpose within them that they do not even know exists.


1 comment:

  1. It's nice to know there is life after school! LOL I have a few years to go before that happens, and at times it feels like we will never reach that goal.
    Then there are the days where my son does everything without having to be told repeatedly, and fends for himself without complaining! It can be very confusing LOL.
    Thanks so much for sharing your story - you give all of us hope for a brighter future!