Christine’s story speaks to millions of parents up against stigmatizing and potentially dis-empowering struggles that come with parenting children with special needs. One of the many inspirations in Christine’s story is that she entered into what used to be a secret world that many of us parents are still unfamiliar with. Her poignant explanation of how she envisioned parenthood to be is an exemplary way for the rest of us to understand the layers of grief that come when our dreams aren’t actualized in the way we not only envisioned them to be, but expected they would be.
I am so proud to honor Christine under the Resurrected Together initiative for May. She may have witnessed the dishonorable ignorance and discriminatory practices that come when your child has special needs, but without having gone through that stage in her parental journey, she wouldn’t have the ability to recognize the miraculous milestones that exist in her children. Her journey prepared her to become the advocate, educator and inspiration she is today. Christine’s story exemplifies why extraordinary children are given to “special” parents.
Meet Christine. Take a moment to acknowledge what she has courageously and vulnerably shared with the hope that it might support someone else. Let her know you’re proud to stand resurrected in her truth together.
I am a wife, mother and Higher Education Professional. I graduated with my Master’s Degree in Educational Psychology. My husband has a degree in Education and is an Executive Director for a state wide educational association so it’s safe to say we’re well versed in education. I also grew up with a sibling who has a cognitive impairment. I have spent a lifetime watching my parents navigate systems to provide the necessary support to my cognitively impaired sister. I’m no stranger to the challenges falling outside of ‘the norm.” I never believed I would need to resurrect. I believed the hard part of my life was having a sibling with a disability and my own family life would be easy.
Not true. However, nothing easy ever brings great reward.
In January of 2004 our first son, Jack joined the world. He was born four weeks early after I had a difficult pregnancy, but we celebrated with a fairly healthy and happy baby boy. In 2007, his younger brother Alex entered the world and completed our family. He too had an early start but it was more complicated when the cord was wrapped around his neck and his lungs were full of fluid. He spent three days in the NICU and then an additional four days in the incubator for jaundice. Alex screamed for at least the first six months of his life. Nothing soothed him; whether it was a swaddle, my breast or even a bottle. After losing weight and projectile vomiting from severe infant reflux, the doctor’s declared him as “failure to thrive.”
Shortly after Alex’s birth I was diagnosed with postpartum depression and I’m pretty confident I suffer from PTSD (that cry is forever ingrained in my brain). The severe reflux led to pneumonia when Alex was just 8 months old. A plethora of medications, additional episodes of pneumonia and what was later diagnosed as asthma overwhelmed us as parents through his first three years.
There are those stages of parenthood where you try to control for everything, including the areas you believe your children fall short (even if by no fault of their own). My husband and I are both educators so we did everything we believed we could to set up the “right” environment for our boys. From the chalkboard wall, swing set, sandbox, water-table, garden, travel, museums and immersing their exposure to books, we believed that the investment in their developmental stages would pay off.
Isn’t this what every parent believes successfully sets the stage for their children?
Then it’s time to enter the American Public School System. The system set up for educational success for all of our children, right? Please note the sarcasm in my voice. I refer to first grade as the “worst” year for Jack. What you believe to understand about the public school system before children is vastly different than what you learn about the system after children, but particularly when you have children with special needs. Jack was in a classroom with 25 other kids in first grade. He showed signs of sensory sensitivity, but instead of responding to this sensitively and responsibly, his teachers would punish him for his developmentally appropriate ways of coping with what he simply couldn’t adapt to without the proper supports in place.
Jack coped with the difficulties and lack of supportive interventions with aggression. He would go into what we describe as “deep concentration” with creative tasks such as drawing, which we now understand to be his strategy for focusing on a single task. We sought out professional help after we could no longer take the weekly and sometimes daily calls from the school. We were surprised to hear the diagnosis of ADHD, delayed motor function and sensory sensitivity.
While coping with the new-found realities of our eldest son’s needs, we were recognizing that our son Alex was experiencing an entirely different host of challenges before even entering school. We often said, “If Jack has a diagnosis, what are we dealing with for Alex?” We were not prepared and looking back, how could we be? Any can any parent be?
We knew Alex faced more concerns at infancy which later presented itself with the constant need for movement, difficulty with peers, an aversion to structured activities, wasn’t coloring/drawing, refused to write letters/shapes and didn’t sing his ABC’s or count to ten. So we decided to get him evaluated before he started kindergarten. He was diagnosed with ADHD, DMDD (Disruptive Mood Disregulative Disorder) and extreme sensory sensitivity. They called his ADHD and DMDD a co-morbid diagnosis which is just a “lovely” word to suggest that one disorder can present at the same time as another.
Two children with special needs is not what I bargained for. In fact, I expected ease. I felt robbed. I felt I didn’t get my due or my fair share. I had already carried the burden of a sibling with a disability and now I had to fight for my children to get the supports they needed so they would be ensured a chance to play in the same ballpark as their peers. I cried some but got angry even more. I’m certainly not past the emotions. The thing about life is that it doesn’t care if you’re grieving or in crisis. It moves on and demands that you move on along with it.
Treatment was a challenging consideration. I could go on for days about my perspective on medicating for ADHD, but I won’t because I believe it’s a family decision. Both of my boys are medicated and in our case it was a necessity for their wellness. Once we finally decided to medicate Jack his world was renewed. Unlike many children, we were fortunate in that the first medication was a perfect fit for Jack. Many children have to undergo a slew of various medications before finding the right ones which was the unfortunate (and challenging) case with Alex.
Jack is able to communicate the lack of control and sense of “crippling” he feels when he isn’t medicated. Alex is still learning how to recognize how the medication helps him. Medication is just one part of their treatment plan. We are invested in helping our children learn self-awareness of symptoms so they understand how the medication may or may not support their needs. It is also our effort to teach our children to feel empowered in their own mental health care.
Jack is thriving with his current treatment plan. Jack is an avid reader, plays piano and is self-taught in areas that exceed his own peers. Boredom is a trigger for Jack so it’s imperative that he is stimulated with learning objectives and topics both academically and socially that set him up for success. Middle school presents its own challenges for any adolescent. Jack has few friends socially but they are loyal. I’m very proud, Jack has an incredibly creative mind that I believe will present endless possibilities for him.
It took us years to find the right treatment plan for Alex. Since he presented with significant academic and behavioral challenges at school, Alex has an alternative school placement where behavior is the first priority to help enable successful learning outcomes. He is currently bused out of district in an enclosed classroom. As a 4th grader, Alex is currently writing at a 1/2nd grade level. For years he couldn’t and wouldn’t pick up a book. He is still working on addition and subtraction. His IEP plan consists of occupational therapy, speech therapy and meeting with a social worker on a weekly basis. We have had to come to terms with the stark reality that school will always be a challenge for him.
I’m very proud of Alex for his ability to make friends with anyone. He loves animals, is creative and has endless possibilities.
Time spent grieving is never a wasted, but rather a necessary piece of the process. No parent wants to see their children suffer just as no parent wants to accept the daunting realization that we can’t control for it either. I spent time feeling depressed and angry for not getting what I felt I was due. I felt rage at teachers who didn’t seem to care and couldn’t provide even the smallest inkling of respect for Jack and Alex . Through my grief, I would look around and feel bitterness for anyone who had little to no challenges with their children. I denied myself certain life experiences thinking I needed to be fully present for my boys because others didn’t understand them. So I did what most of us mothers do. If we see our children suffer and we can’t control it, then we put this unspoken sentencing on ourselves to bear the responsibility of everything that was never ours to bear.
Then there is the stigma of mental wellness and disabilities that families are forced to face. Teachers reinforced our full responsibility of the circumstances by saying things like,
“You need to undo what you did in the first five years of Alex’s life,” and
“Behavior is a reflection of your parenting.”
This did nothing but force shame on us as parents that only weighed us down further. It came on top of the grief and blame we already placed on ourselves. The message for millions of us is clear and unfortunately it’s not always subtle. “Bad children equates to bad parents.” There is an unspoken consensus in parenthood that it’s the most important job you will ever do. The judgment and stigmatizing assumptions put a fight in me. I knew I was a good mom. I knew I sought out affirmation for anyone willing to give it because there are those moments when we simply need it in order to
How did I find my peace? How did I find ease?
I found my peace in helping other parents. Friends (true friends) stayed when the challenges set in and that support delivered me to an empowering place to support others. This is how I rose to the challenge set before me. I count my blessings.
“Thank you God for blessing me with far more than I deserve.”
This is what hangs in my office. I have many blessings and it’s my privilege to have them, even when challenging. There are days I still resist the responsibility and yes, there are days when I shut down. Grief doesn’t have an indefinite stop watch, but there are days when I know I must take action for those who are facing more challenges than I am. So I advocate, support, speak up and out. I pose questions when answers aren’t readily available.
I’ve come to accept and own the responsibility of being their mother because it’s my greatest honor and accomplishment. I’ve come to the place in my journey as a woman, wife, mother and professional where I accept and own the responsibility. Every day I choose to rise to what is laid before me. It’s never easy, but it’s always with love and most importantly, it’s mine.
These two are all mine.
This is my story and my intent in sharing it is to help support other parents who may be venturing onto new, unfamiliar and terrifying territory like we were years ago. It’s also to support necessary conversation about a stigmatizing subject matter that doesn’t just impact children, but family systems and communities. It’s also to honor my two extraordinary boys, Jack and Alex.
For any parent presented with the difficulty and controversial decision to medicate their children, I highly recommend the book, “Straight Talk,” about Psychiatric Medications for Kids by Timothy Wilens, M.D. The leading text outlines the full range of options for medications and may provide comfort when your new found world has just broke open.