If wishes were fishes we would all be swimming in riches!

if wishes were fishes we would all be swimming in riches

A baby was born and he was a heavy-weight baby. He was so chubby he looked like a miniature Buddha. He also looked like he had gone a few rounds in the ring with Muhammad Ali. He was puffy and a bit bruised due to the stress of delivery and because he was so big, his mother was bruised as well. Her legs looked like someone had taken a baseball bat to them, repeatedly. He was almost 10 lbs. and 10 days over due. Delivered without medication, his mother felt every 21 inches of him. But this story isn’t about the mother, it’s about the boy and his journey.

He is going to be 21 in a few months. He had an IEP (individualized education plan) during all of his years in public school, starting in his second year of first grade. He was on multiple types of medications. Nothing seemed to really be effective. He excelled at every sport he attempted. He could play basketball, surf, play soccer, baseball and even attempted to play the trumpet one year. He was never malicious or mean-spirited.

He was diagnosed with ADHD and a learning disability when he was 7. His mama waited to have him assessed for a potential disability because she told that age 7 is the developmental age at which time a child will either mature and out grow certain behaviors (catch up so to speak) or present with consistent symptomology relating to a disability. It’s also legally the age at which time a child who is diagnosed as Developmentally Disabled must be re-evaluated and provided with some sort of classification that relates to their disability, such as Other Health Impaired, Specific Learning Disabled, Autistic, etc.  You get the point. He wasn’t diagnosed with developmental delays, but looking back on his milestones, his mother saw red flags. But she also saw him achieve some milestones way before he should have; like sitting up at 4 months, crawling at 5 months, and walking a 10 months. When he was a toddler his mama felt like I had a spring up her ass because he was so active.

So she waited to see if he would mature and he didn’t. He had a kindergarten teacher that called her almost everyday in hysterics about his behavior. She told his mother at the end of the year that he definitely had ADHD and definitely needed medication. Nowadays such statements can turn to litigation. Believe me, I know, I am the mother and I am a special education teacher now.

His kindergarten teacher was not so delicate with intimating her frustrations. It was upsetting and I was newly separated with two small kiddos and a father whose whereabouts where unknown. I didn’t really know what to do. The kindergarten teacher retired that year and got married and he was placed in a first-grade class with a high-energy teacher who labeled herself ADHD and was thrilled at the challenge of teaching my boy. I waited and watched and he didn’t catch up or mature. We changed schools the next year and I decided to have him retained. That year his second first-grade teacher used the “back-door approach” and asked why I hadn’t considered medication, even though he had a diagnosis and a pretty significant one at that.

He was diagnosed privately because I was unaware that the school system could conduct a battery of assessments for FREE, if a child’s behaviors impeded his or her learning or the learning of others. After a few weeks I met with the psychiatrist and reviewed the diagnostics. He was brilliant! He had an IQ on the far-right-side of the bell curve, yet he also had a 41-point discrepancy in written language and a 40-point discrepancy in reading, along with the ADHD (hyper-active type). That discrepancy is big deal. Using a standard model for assessing a child, if the discrepancy is 14 points or more, you have a disability. As I said, his disability was significant. His teacher shared with me that if I tried medication and it worked, what did I have to lose? So I medicated my son.

I had originally decided to not medicate because I knew little about the side-effects and what I did know, I didn’t like.  Consequently, the majority of data-driven research indicated that it was detrimental to retain children with disabilities. Additionally, I was told by the psychiatrist that if I didn’t medicate him he would continue to digress and struggle and in all likelihood he might self-medicate down the road. Again, (back then) research indicated that children with ADHD who were not medicated could potentially end up drug addicts.

When he entered 3rd grade I enrolled him at a charter school that delivered constructivist-based learning. The cultural climate was supportive, safe, and non-judgmental. Creative, individualism, and inquiry were encouraged. My son knew no strangers and had many friends and light that shined brightly. These were the most productive three years of his life. However, in 5th grade his IEP team wanted to retain him. I contested because he had already been retained in first grade at my request.

There were 14 members that attended that meeting. Talk about intimidating! I invited my Godmother, a former teacher and teaching fellow at the local university, to be an advocate and support person for me and my son.  She was a knowledgeable educator and no stranger to the plight of being a parent of a child with challenges, as her daughter had multiple diagnoses.  The director dismissed everyone, except those members that were “legally” necessary to attend the meeting, plus my Godmother. In the end, the team agreed that retention was in his best interest. “If we retain him, it will give him an opportunity to mature”. Because I didn’t want him to be stigmatized at the charter school he had attended for three years, I moved him to our district middle school. He was retained there after a battery of assessments were conducted. He entered 6th grade at a 4.5 grade reading level and later entered 7th grade above grade level, at grade equivalency of 7.5. He had made significant growth that year, even though the odds were against him because he has been retained.

In 7th grade he began to exhibit behavior challenges, ultimately stemming from substance abuse. I was clueless at the time. I thought it was “mental health issues”. Children with learning disabilities are more inclined to demonstrate behavioral challenges, especially after being retained twice! I was busy being a beginning teacher and raising three children on my own. He digressed, received intensive counseling, and support services, but was eventually hospitalized multiple times. He spent a year in a treatment center. He was placed in therapeutic foster-care without my consent by his father when he briefly lived with him. He reenrolled twice in high-school, but was eventually long-term suspended. He was an active gang-member, attempted suicide, consequently had a heart attack at age 18, and has done jail time on more than one occasion.

A little back story: When my baby boy was one month old he was misdiagnosed in the ER in a small NC town. He was given two shots of an antibiotic and although I tested positive for Group B Strep; bacteria that we all naturally have in our bodies, but that beachheads during pregnancy and can have dire consequences if left untreated during delivery.

Even though I asked if he could possibly have meningitis, I was told by the ER doctor that it was probably an ear infection or a urinary infection. The attending physician patted me on the leg, smirked at my then husband, as if to indicate, “silly post-partum, worrisome mama, we know how woman can be hysterical, nervous Nellies” and shared that I shouldn’t worry, but should instead follow up with his pediatrician and he sent us on our merry way. I did follow up the next day with our family doctor. I indicated that my neo-natal son was seen in the ER the night before with a fever of 102, had a chest x-ray, a battery of blood work, other assessments, and was given antibiotics to treat what they thought was a minor infection and we were sent home. I shared that he had a rash on his face and torso and was still running a fever and just didn’t seem “quite right”.

My son was my second child. He was little brother to a sister who was about 28 months at the time of his birth. I was not a novice to parenting or the needs of babies. I was a seasoned mama who knew my “ass from a hole in the ground”. The doctor’s office said they would schedule an appointment, for a week later. After taking a few deep breaths, I called the office back, asked that my son’s and his big sister’s records be prepared for pick up, and shared that I would be by shortly. In the meantime, I called our local pediatrician’s office and left a detailed message about the previous night’s chain of events. Almost immediately I received a return call from a pediatrician who shared that she wanted us to come in immediately. We did.

We met with the doctor. I shared with her everything that I knew the ramifications of having Group B strep and my concerns that my baby might have meningitis. She asked how I was so knowledgeable and whether or not I was in the medical field. I replied, “I just read and research a lot and I trust my instincts.” She confirmed that she thought he might have neo-natal meningitis and that a lumbar puncture was in order. I called my mother who lived several hours away to let her know the situation. We weren’t speaking at the time due to a disagreement about where my son would be baptized (another story for another blog). She came right away to help.

Long story short, Buddha Baby was misdiagnosed in the ER, did indeed have meningitis, and would have to stay in the hospital for 2 weeks receiving broad spectrum antibiotics via IV. After numerous failed attempts to administer an IV, two surgical ankle cut-downs and several infiltrations of fluid, we were advised to go to UNC-Chapel Hill and have a main-line provided to his heart. The reason the IV was not working was because the hospital was using adult catheters. We were told they didn’t house any wing-tip-baby size catheters because the “shelf-life” for them was too long.

Baby Buddha’s dad and I decided to ask about alternatives. We felt that it was already a one-in-a million chance that he had contracted meningitis and a chance event that the hospital didn’t have the appropriate IVs, so we opted for shots around the clock. I spent two weeks in the hospital holding and nursing my Buddha Baby, all the while watching him cry in agony each time he received a shot. My mother took his big sister back home because I needed to focus my energy on my son’s health and well-being. His dad never stayed in the hospital and only visited a few times. I spent my birthday, our wedding anniversary (missed an REM concert), and Thanksgiving in the hospital. At the end of November, we went home.

My son is currently incarcerated for multiple felonies. His girlfriend is expecting their child in April and I’m going to be a grandmother. I have an over-arching sense of guilt and failure as a parent. I look back on what I could have done differently and replay the scenarios of “would-a, could-a, should-a” over and over in my head. What if his father didn’t leave when he was three? What if I had not married my third child’s father later in life? What if I had not given him medication? What if I had not retained him in first grade?  What if he had not been retained in 6th grade? So many what ifs….”if wishes were fishes we would all be swimming in riches”.

I am a special education teacher with a master degree in special education, focusing on emotional and behavioral disabilities. While I was pregnant with my third-child I returned to school to become a teacher. I felt that as a parent of a child with disabilities, perhaps I had what it would take to teach, love, nurture, and empower children with disabilities. I felt that my son had not received adequate support throughout his education. There were so many gaps and areas where he fell through the cracks. Perhaps as a teacher I could share my story with parents who were going through similar situations and somehow let them know that they are not alone and that “this too shall pass”, “there is light at the end of the tunnel”, and that “you didn’t cause it, you can’t cure it, control it or change it”, you can only love them, unconditionally, even when they end up in jail or the hospital from a suicide attempt or a drug overdose or when they become a drug addict. Yes, all of those things have occurred in my son’s life and yet, there is still hope. There is hope that he will get it together and and perhaps the Baby Buddha will become a self-enlightened Buddha-man. His story is not over. He still has many miles to go. There is help if he is willing to receive it.

I understand the stigma that goes along with having a child that doesn’t conform, doesn’t fit in, that isn’t quite right, that screws up repeatedly, and that as one teacher friend so lovingly put it (that’s sarcasm) “drives me ape-shit”. I understand the hurt, the stress, the fears and anxieties that go along with every year of his journey. I feel the judgment and know the gossip and what is said in the rumor mills. I feel the judgment and the accusations of “she is the parent and it’s her fault” or “the apple doesn’t fall far from the tree”.

I will love my son until the day I die. My hope is that he doesn’t die before me. He has already hit the big, rock-bottom lows, “jail, hospital, near-death”. How much lower must he go? My grandmother said there is no pain as deep or as strong as the one you feel when a child dies before you. There is something completely unnatural about the death of a child. I thought he might die when he had meningitis. I thought he might die when attempted suicide and had a heart attack. My prayer is that he will be a survivor, that he will know the value of his presence in the lives of those that love and care about him, that he will know that he is loved, and that one day, he could save the life of child who is just like himself, by sharing his story.

I hope that I am able to help at least one person by sharing my son’s story. Do not be afraid to ask for help. Do not be afraid to share your journey or the experiences you have had that make you who you are.

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