By Nickie Brandenburger
Parenting is challenging. When a child has a special need – the challenges can pile up a lot faster. The child is subjected to assessments, labels, and words that the parents have to decipher. While all the testing and labeling is designed to help the child get supports and services, the process is overwhelming. And the words thrown at us are usually negative, focusing on limitations and deficits rather than gifts and strengths. When parents hear these words, it can feel like they have been thrust into the middle of combat with no armor to protect them from the heavy blows coming their way.
My 11-year-old son, Thomas, has Sensory Processing Disorder and Anxiety Disorder. Since he was born, my husband and I have been subjected to a number of terms that I tend to think of as ugly words. My first experience with ugly words was when my first-born was only three months old. He started refusing to breastfeed and only slept one hour at a time. Our pediatrician suggested that he was just colicky. But when he began to lose weight we became worried. I can remember seeing the term “failure to thrive” in his medical record as he moved from the 75th percentile in weight to the 5th percentile. This was my first experience with ugly words and I was completely blindsided. At 18 months, Thomas began to bite others. He only had 1-2 words and would often tantrum, flapping his hands as he screamed. We sought Early Intervention from our local Community Services Board and saw the words “Developmental Delay” and “Sensory Processing Disorder”. As Thomas grew we continued to encounter professionals, compassionate people, who genuinely wanted to help our son. We heard words like difficulty coping, difficulty with transitions, risk for emotional problems, inability, poor self-concept, clumsy, weak fine motor skills, low muscle tone, slow processing speed, suppressed working memory, uncooperative, disruptive, out of control, phobia, hyperactive, depressed, aggressive, hidden disability, behavioral concerns and unregulated, just to name a few.
The ugly words always hurt and have left deep scars. Every time we have a meeting, phone call, or discussion with a professional, I prepare myself for combat by putting on a suit of armor to protect from the words projected toward me. Sometimes they hit me like rapid-fire pellets, my brain swiftly processing the meaning of the words as I try to ignore the sting. Other times, the words hit me like a cannonball, square in the chest, knocking the breath out of me as I stumble backward feeling as though the progress gained, has now been lost with this new barrage of terms.
From an early age, Thomas has been aware of his struggles and the words that are used to describe his special needs. I have told him that the two most important words he should remember are, explanation and excuse. I frequently remind him that the words used to describe his diagnosis are an explanation for why things can be harder for him than other children. I also remind him that those same words should never be used as an excuse to not try hard to accomplish his goals. When my boy is struggling with something he will frequently repeat back to me, “I know mom, it’s an explanation not an excuse.” Only recently, did I learn that I should listen to my own advice.
My son just finished the first nine weeks of his 6th grade year. Let me preface by saying that middle school has been a huge adjustment for all of us. We were blessed with great elementary school teachers and administrators. But, the last four years have been incredibly tough for Thomas academically, socially and emotionally. Anticipating a tough transition to middle school, we began preparing back in the spring. There were phone calls with psychiatrists to adjust medication, increased appointments with his therapist to prepare him emotionally. We had an IEP meeting in the spring and invited professionals from his middle school to come to his elementary school and learn more about our boy. We used social stories and visited the middle school to become acclimated with the layout of his classes. We attached his schedule to his three ring binder so he would know when and where to transition between classes and we practiced his locker combination.
Earlier this week, my son’s middle school conducted a parent-teacher conference night. My husband and I planned to meet with each of his teachers in order to discuss the first nine weeks. We have been to enough of these meetings that we knew what to expect, more of those ugly words. I put on my suit of armor and joined my husband as we prepared for combat. I felt nauseous, my hands were sweaty and I was fidgety; but, my armor was securely in place.
We were completely unprepared for the words we would hear that particular evening.
Initially, we met with his homeroom teacher. She smiled and we chit chatted briefly before she began giving us an update on Thomas’s progress. She began to use words that I have never heard a professional say in regards to my son. She told us he is a bright student who participates actively in class and she had no concerns. We listened intently interjecting here and there. After our allotted time was over, my husband and I wandered out into the hall, dumbfounded and speechless.
As we made our way to the second teacher we assumed we would hear more of the ugly words to which we were accustomed. We were wrong. Teacher after teacher repeated the same sentiments and we began to hear words that can only be described as, beautiful. We heard words like; confident, music comes naturally to him, well liked, delightful, participates with enthusiasm, incredibly smart, self-assured, happy, kind and funny. One teacher explained that the majority of middle school students are self-conscience and fear standing out from the crowd. She told us that she wished she had more children like my boy, kids that are happy with who they are and not afraid to be different.
As I wandered back to my car, my own words became trapped in my throat as I fought back the tears that always come after a parent teacher conference. These were happy tears, a result of beautiful words that did not sting or cause me to stumble backwards. These words floated through the air, and landed sweetly on ears in desperate need of hearing something beautiful.
I immediately texted my best friend to share our good news. Later that evening, when I saw my boy, I gave him a huge hug, and told him he was a rock star. The next day, my co-workers and I gathered for a team meeting and I shared my experience. As I repeated the story, with tears flowing down my cheeks, I looked up and saw tears in the eyes of my co-workers. I am fortunate enough to work with men and woman who are all parents and family members to children with special needs. I saw my own joy reflected in their eyes because they knew exactly how I was feeling about those beautiful words. It was at that exact moment that I realized I should adhere to the advice I always give me son. Those ugly words have always been an explanation for why I feel the need to put on my suit of armor. However, these same ugly words should never be an excuse to not believe in my boy’s ability to accomplish his goals.
So today, I took off that suit of armor and put it in my proverbial mom closet along with my mom guilt mask and my superhero cloak. Today, I will relish in these beautiful words and let them warm my soul, re-energize my depleted body and refresh my exhausted mind. My boy is having a good year and I could not be more proud of him.
Nickie Brandenburger is married to Mark and is a mother to two children; Thomas and Leah. Thomas participated in Early Intervention services when he was a toddler and receives ongoing support for Sensory Integration Disorder and Anxiety Disorder. Originally educated as a special education teacher, Nickie began working in Support Coordination in the early 1990s at the onset of Virginia’s participation in the Home and Community Based ID Waiver. She has had the opportunity to work in South Carolina’s Developmental Disability service system and spent 17 years at Chesterfield Community Services Board helping families of adults and children with Intellectual Disabilities. She is now the Director for the Family to Family Network of Virginia at the Center for Family Involvement.