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 31^st, 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 5^th 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 5^th 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.

Chatkath

Parents Insights

My son had a bad day at school last week, he was in music class (mind you he is in 2nd grade) and the music teacher asked him "to keep his hands to himself." How many times as a parent have we said that phrase?  Anyway, my son got extremely aggressive for no reason and started yelling at the music teacher.  His sudden outburst scared the teacher and she sent him to the principle's office. 

Well, they called me and I had to rush to school to get him.  He was expelled, but the principle thought he needed to "calm" down. I was shocked, embarrassed and didn't even know what to say.  Well, after I got in the car with my son, he explained that he was just "mad" at the teacher for yelling at him.  It took all my strength not to yell and scream at him either.  However, to get him to calm down I had to calm down myself and help him understand that he cannot act like that in school.  He explained that he was just mad....but he doesn't act like that ever.  So the sudden surprise of it was just plain shocking to me! 

Anyway, after he understood that his behavior was wrong and that he shouldn't do it at school he said he was sorry.  I think he understood.  But have other parents encountered these sudden outbursts and been totally taken by surprise by it? 

He is such a good boy and I was totally surprised!! Please share your experiences....

Personal Update

Recently, after reading an email from a member regarding her son's behavior, I thought to myself that I was quite fortunate to see changes in my own son's behavior, to the point where things were becoming smoother at home and at school.

I would like to recant that statement!

It would appear that my son's behavior has not changed sufficiently to warrant that all elusive pat on the back! I received a phone call from my son's principal this morning in which he told me that my son would be staying home from school for two days for swearing at his teacher.

I have no idea what prompted his outburst, but I do know that he obviously has a long way to go before I can rest on my laurels.

All the frustration and depression that I had managed to overcome came flooding back in an instant and I feel like I did when I first started on this journey.

So many parents ask me how I manage to cope with the behaviors, acting out, disrespect and sometimes down right rudeness that seems to cling to these children like lint on a wool sweater, and the only advice I can give is to be consistent, set up counseling for your child, get some support and be kind to yourself.

Well, we have counseling in place, and I have support, but at times like this, nothing seems to help rid me of the feelings of isolation, guilt, and frustration.

I have to say that these feelings will abate after a day or so, but in that time frame there isn't much that I can do to feel better, with the exception of crawling back into bed and sleeping away the next few days!

However, that isn't going to happen, even though that is exactly what I feel like doing! Writing, and sharing my stories with other parents facing the same challenges does help. Also, knowing that my son is getting older and will be better able to control his outbursts quiets some of the anxiety. I just wish it didn't take so long for the epiphanies to manifest.

I was told just the other day that my son is taking a "hard road" and seems to learn his life lessons the hard way, and I'm sure that other parents with children like mine have been told the same thing.

Unfortunately, there doesn't appear to be any type of solution for that problem...at least not one that I have been made aware. So for the time being, it's back to the drawing board. I think there are several household chores that have my son's name on them. It might not hurt to show him what happens when you don't have a good education...

Community News

Today marks the beginning of an online community for parents raising children with ADHD, ADD, ODD, OCD, and ADHD/ODD. There is a need for this community, and for more awareness about these disabilities and their affect on parents and children.

Society views children with these disorders as "hard to handle", "difficult", "unruly", "undisciplined", or worse yet, as "bad seeds". Parents of these enigmatic children are often ostracized, criticized, shunned, and simply labeled as poor or bad parents.

One the plus side, there has been more television exposure regarding ADHD and ADD, as celebrities come forward with personal stories regarding these disabilities. This is a huge step forward for us "regular folk", and gives us a glimpse of what might be, however, not all of our children will become celebrities, and enjoy their success.

Even with the rise of exposure, parents raising these children continue to struggle. Resources are fragmented and difficult to find, leaving us feeling isolated and confused. Support groups are often outside our areas, or non-existent, which furthers the feelings of isolation.

An online community can reach anyone - world-wide - all that is needed is an internet connection. Parents can now connect with each other; share their stories, resources and receive much needed support. If you are a parent struggling to raise one (or more,) of these charismatic and often times exasperating children, or you know of someone who is, please join or pass this on.