Maxwell's Journey: Our First Step

Maxwell's First Day

Maxwell's First Day

I wish I knew everything that I know now. From the moment Maxwell, my now 19 month old son, was born, I noticed how different he was from my first child. The phrase, “Every child is different” never rang more true. I want to tell you our story thus far on what I call, the special needs highway. It’s not an easy journey. There are many twists, turns, dead ends, round abouts, and sometimes you just feel lost. You reach down deep inside of yourself to depths you didn’t know existed, and muster up whatever strength you have left, and keep going. I hope that our story helps someone who is starting their journey.

In October 2014, Maxwell came into our lives 3 weeks early (normal pregnancy), healthy and with a full head of velvety, black hair. He was so beautiful. His apgar scores were high, so there were no worries about lack of oxygen. We left the hospital 2 days later and brought Max home. The very first things I noticed that were unusual about Maxwell were:

  • Slept for long periods of time (4 hours+).
  • Could not be calmed by rocking. Had to be placed on his tummy to calm himself.
  • Foamed at the mouth when he came in contact with the wind.
  • His back cracked and creaked. It didn’t feel like his muscles were strong.

As months passed, Maxwell didn’t interact with the world around him. He was very content, always happy, but did not play with toys, make eye contact with anyone, roll, sit, or hold any objects. His eyes would cross and he only looked to his left side. He stared at the light, and when overstimulated, he would shake his head back and forth, then, fall asleep for long periods of time.

At 7 months, our pediatrician referred us to a neurologist because Maxwell’s head circumference wasn’t increasing.  The neurologist ordered an MRI and told us that Max had borderline delayed myelination and hypoplasia of the anterior corpus callosum. The doctor hypothesized that was the cause of Maxwell’s delay in development and cortical vision impairment.

Still, no one could explain the whys behind Max’s condition. There was no event in utero that caused this to happen. The neurologist recommended that we begin the Birth to Three Program in our state of West Virginia. My best friend, told me I could call Birth to Three and refer Maxwell myself instead of waiting on the doctor to do so. I made the call, and we set up our first IFSP meeting for Maxwell.

Birth to Three is an AMAZING program. We initially met with a service coordinator who took information down about Max and had me pick a team of professionals to come to our home and work with him. Over the next few weeks, we met with our physical, occupational, speech, developmental, and vision therapists. Each one did their own thorough evaluation of Maxwell, and he was approved for the program. As a family, we were able to decide how frequently each therapist would come to our house and work with Max.

At 8 months, Max began therapy. The progress he has made in the Birth to Three program is nothing short of INCREDIBLE! The truly wonderful thing about Birth to Three is that approval for the program is not based on your household income, but solely on the child’s need for early intervention. We have a team of six professionals who work with Maxwell weekly and monthly. The program also provides Maxwell with equipment, and other therapy tools with no charge to our family.

Birth to Three was our very first accomplishment on the road to helping Maxwell. Therapy is truly the key to all the progress Maxwell continues to make, and everyday we carve out time to do exercises with him. When we began, I dreamed of watching Maxwell roll, sit, stand, walk, and then I tried to push those thoughts out of my mind. I focused on our daily routine, and celebrated the inchstones.

This past weekend, one of those dreams came true. At 19 months, Maxwell decided it was time to roll over.