The only person’s life not worthy of a movie is the unexamined one. We all bear evidence of the human experience: dealing with adversity, caring for others, and hard-won resilience in the day-to-day-day. If this blog can help one other person navigate the complexities of coping with, and helping a special needs child achieve their potential, then I am content.
I see others like me in denial, stigmatized by cultural norms, or too overwhelmed to take another step.
The experience nearly broke me. I brought all that I am to the table and was unequivocally unprepared for the daunting task ahead. I see others like me in denial, stigmatized by cultural norms, or too overwhelmed to take another step. Self-judgment is cruel; the burden is heavy enough. I’ve never been more terrified to be accountable for something and to someone so much larger than myself – my child’s future. Find comfort in knowing that you are not alone. There is a kindred spirit here.
I’m an advocate of early intervention. Time is not your friend. The foundational synapses in the brain are locked down by age 12 – 14, sometimes as early as 10 years old. The work is hard, time-consuming, and exhausting. I began my journey when my son was 4 with talented, caring professionals dedicated to making a difference, and changing lives.
At four, Luke was shutting down; we were losing our connection.
Life for our Luke hasn’t been easy. At 18 months, he began having daily seizures; his left side did not develop. Safety was a serious issue with constant falls. Communication was very difficult with no points of reference in his speech. He could not understand us, nor could he express himself. At four, Luke was shutting down; we were losing our connection. His short-term memory was so poor that when we counted five buttons, he could not recall how many and became exasperated. Luke’s fine motor skills were so impaired that he could not attach Legos or hold a crayon. His gross motor skills were very poor preventing him from navigating playground equipment or swinging on a swing. He could not clap or use his left hand.
Luke’s proprioceptive skills, knowing where your body begins and ends, did not develop; if he could not see his legs, because of bubbles in the bath, he had no awareness of where they would be. Luke could not sing a song or distinguish abstract language to know where the top of his head is, the top of the car, or the top of the paper. Eye contact was overwhelming, Luke would flutter his eyes, and people thought he was being rude. Unfamiliar food textures made him regurgitate; he couldn’t go down an escalator or dress himself, button, zip, tie his shoes. His vocabulary did not begin to develop until fourth grade.
Everything had to be hard-wired with hundreds if not thousands of iterations to get a single synapse to develop in the brain.
Specific fabrics were offensive as was water and sand. Vacations were not fun for Luke, and bath time was a problem. He had a heightened fear for his personal safety, and was easily set off with “night terrors” by a random sound. We sought intensive intervention and I left my career to take care of Luke’s needs. Luke had to work for every gain he’s received, everything had to be hard-wired with hundreds if not thousands of iterations to get a single synapse to develop in the brain. Once it did, it was like turning on a light switch, not there and now there permanently. On to the next challenge.
Luke asked why everything was so hard for him. I told him that God gives us all different gifts, like how his (special needs) friends are good in math, but can’t play poison or four-square at recess. The next day, Luke launched a before-school program to teach his friends and younger students how to play and compete. He joined the underdog team to level the playing field and protect them. Fast forward to the end of fourth grade, and that snowball of development was taking shape. Luke progressed with the terrific support of the school system and specialists. They have my deepest appreciation for serving the most vulnerable.
Be kind and patient with yourself. Take the first step.
I tell you this to give you hope. I am not an expert, but I am an expert on my child. He has no greater advocate as I’ve come to embody ‘mamma bear’. When told my son would have to do hundreds if not thousands of iterations to develop what another child seemingly does naturally, my response was, “well, we better get started then”. Be kind and patient with yourself. Take the first step. Breathe and begin.
Future Posts:
- Hearing the News
- Denial, Cultural Stigmas
- The Unbelievers, Being the Expert
- Empowerment
- Advocacy
- Assessments
- On Being Human
- Digging In
Resilient Moms - Making a Difference 