Imagine arriving in a different destination other than that which you anticipated. Imagine that you do not have your bags packed for the appropriate activities and climate. You have no maps or knowledge of the customs or language. You do not know what information is correct or know whom to trust. Your plans have changed. Yet, as you are accepting that your destination is permanent, you realize that you have to make the best of it, or it could destroy you and the rest of your family.
I first came across the inspirational essay “Welcome to Holland” by Emily Perl Kingsley years ago when I sat on the board of a neonatal foundation. Kingsley’s essay captures the feeling of being the parent of a child with special needs. Working with parents in the trenches of profound shock and grief, during a time that should have been utter joy, was immensely difficult. At that time, I was the proud parent of one child, a son my husband and I believed to be “normal.”
I recall feeling guilty on occasion: when sitting with parents in the Neonatal Intensive Care Unit and offering support or a listening ear, or when I held and rocked the ever-so-fragile tiny infants that fought for survival. I was blessed with a healthy child while many of these parents faced the possibility of death, long-term challenges, or disabilities stemming from their children’s premature arrivals.
I also felt thankful that we had dodged a bullet; however, Kingsley’s essay resonated with me as a mother and lodged within my heart.
Fast forward years later. My oldest child was a handful and exhausting. He was happy and bright, but often without focus. We chalked this up to him being “all boy.” As his parents, we appreciated his gifts. However, his kindergarten teacher felt otherwise. Vehemently. She called us in for a conference only two weeks into the school year. She told us, “I’ve never had a child like him during my 25 years of teaching.”
We asked her to work with him, to challenge him; he was in his element when challenged. We could tell by the set expression on her face that she was not going to embrace our requests. We were in for a very long year.
Our son was clueless about what was going on. We had many parent-teacher conferences during that year. The last one was in the early spring after we had already made the decision to enroll him in another school with much smaller classes and interactive learning.
Our son thrived in this new school environment, yet his focus continued to lapse. We painfully faced that our son might have some issues, and had him evaluated by a team of professionals to make sure he was not falsely diagnosed. The testing indicated what we had long suspected, but tried to deny: our son had attention deficit hyperactivity disorder.
We chose to address his condition holistically, without medication. We stayed in daily contact with his teachers. We made changes to his diet. We put a behavioral management plan in place.
We saw no improvements. Our son’s grades went up, and then they went down. He was focused in one subject and disruptive in another. There was no pattern throughout the day or by subject matter. His behavior was just as maddening in karate — an activity we thought would help curb his impulsiveness.
Emotionally, we rode the wild roller coaster with him daily. Out of options, we began to consider the possibility of medication, something that was of great concern to us. My husband and I had many long discussions between the two of us, and with doctors, and tears often accompanied these. We continued to straddle the fence.
Our son’s behavior became more erratic as puberty set. We made the decision to go ahead and medicate him. He would take a Class CII drug, a federally controlled substance that could lead to abuse or dependence and carried the possibility of many other serious side effects. Medicating our son was one of the toughest decisions we ever made, but with the arrival of our third child and her severe sensory processing spectrum disorder we now underscored the importance of intervention and that earlier was better.
The medication made an immediate difference. Our son was able to focus and control his actions. He could stay on task and out of trouble. His grades moved up and stayed up. His confidence in himself, his abilities, and peer relationships grew. He graduated high school with honors, and received many merit awards to attend college.
We had countless talks about the seriousness of the drug he takes. About the need to monitor him daily and share how he feels emotionally and physically. About how kids would likely ask him for some of the medication when they were under stress — which did happen — and what those consequences could be if he were caught doing so, by us and the law.
Looking back, we put the decision to medicate our son off far longer than we should have. But, when present in the moment, there is rarely the gift of perspective. Parents of children with special needs often struggle with not having the support of others, finding reliable information about options, and moving through the grief of parenting a “less-than-perfect” child.
Dragging my feet, I arrived in Holland, only a different region than I had with my daughter. Slowly, through the years and with my son’s openness about his attention deficit hyperactivity disorder, I’ve become acculturated. Holland is not a horrible, scary place, just different. As Kingsley says in her essay, “You must go out and buy new guide books. And you must learn a new language.” I have. I have embraced being the parent of kids with special needs, thankful that Holland exists and that I can appreciate the very special, wonderful things that it offers.
Judy M. Miller savors time with her kids. She is a certified Gottman Institute educator and the author of “What To Expect From Your Adopted Tween” and “Writing to Heal Adoption Grief: Making Connections & Moving Forward.”
Attention deficit hyperactivity disorder statistics
• Boys are three times more likely than girls to be diagnosed with attention deficit hyperactivity disorder.
• It does not discriminate among race. The prevalence of the disorder is 9.8 percent among whites, 9.5 percent among blacks, and 5.5 percent among Hispanics.
• Children with attention deficit hyperactivity disorder are more likely to have learning disabilities and language deficits such as poor listening and reading comprehension and verbal expression.
• Children with attention deficit hyperactivity disorder are also challenged by poor organizational, memory, and fine-motor skills.
Research by Dr. Russell A. Barkley, www.russellbarkley.org/index.html, an internationally recognized authority on attention deficit hyperactivity disorder in children and adults states:
• “The emotional development of a child with attention deficit hyperactivity disorder is 30 percent slower than their non-attention deficit hyperactivity disorder peers.”
• One to three children has attention deficit hyperactivity disorder in every classroom of 30 students.
The statistics below are from the Centers for Disease Control’s “Key Findings: Trends in the Parent-Report of Health Care Provider-Diagnosis and Medication Treatment for ADHD: United States, 2003-2010” www.cdc.gov/ncbddd/adhd/features/key-findings-adhd72013.html.
• More than one in 10 (11 percent or 6.4 million) US school-aged children have received the diagnosis from a healthcare provider.
• The percentage of children between the ages of 4 and 17 continues to increase, up 42 percent between 2003 and 2011.
• The percentage of children between the ages of 4 and 17 taking prescribed medication for attention deficit hyperactivity disorder increased 28 percent between 2007 and 2011.