Baby A & Baby B: My life as a mom of 2 special boys

Caption: Jen Johnson is the mother of two sons with very special needs. She started a business — a kids’ gym called The Sensory Playce — specifically to help hers and others’ children. (Courtesy photo)

By Jen Johnson

I always wanted to be a mom, and after completing a master’s degree and building a career, I decided it was time. With the help of fertility treatment, I was blessed with twins. It was at my 20-week ultrasound that I learned one of my babies would be born with a serious heart defect called Tricuspid Atresia. So many thoughts went through my head. How would I treat twins when one had a serious medical issue? How would I afford the time away for out of state surgeries? Would my child be able to participate in activities and live a “normal” childhood? What would my child’s quality of life look like?

It would be two years later when I would learn that Baby A’s serious heart defect was not nearly as difficult as Baby B’s mental health and developmental difficulties, which would soon become apparent.

My special Baby A had a difficult first five years undergoing seven surgeries, including two out of state open heart surgeries. I was thankful for all the prayers and support of those around us during this time. It was my Baby B who others did not understand and who struggled developmentally and psychologically. After Baby A’s first open heart surgery, he started physical therapy through an infant and toddler program to help him learn to crawl. It was then that the therapist from the infant-toddler program noticed the sensory differences in Baby B and recommended an occupational therapist evaluate him for services as well. This started us on a long road into multiple services, including occupational, speech and physical therapies.

By age 3 my babies had graduated from the infant and toddler program and qualified for services through the school district, spending two years participating in developmental preschool. We also reached out to private providers to continue with therapies and for Baby B added counseling and medication management.

As we continued down the road of providers, adding new diagnoses and services, I realized this would now be my life. As my schedule began to fill with appointments and driving my children to multiple providers, I lost what had previously been the life I had known. The dreams I had for my children and their future had changed. Learning to navigate the system, finding providers, completing paperwork, getting referrals, and being placed on waiting lists (often months and even years long) became my new reality. Today that reality feels normal; at the time is was lonely, scary, and overwhelming.

My babies are now 10, each with their own unique needs. Baby B has been diagnosed with autism, bipolar disorder, ADHD, ODD and anxiety. Baby B currently participates in multiple interventions, including occupational and speech therapy, counseling, medication management, community behavior rehabilitations services, habilitative interventionists, and social skills groups. Baby A is doing well physically and currently only requires annual cardiology check-ups. The doctors are hopeful for Baby A’s future and believe future cardiac surgeries will be minimal. Baby A also struggles with sensory processing disorder and auditory processing disorder. Baby A continues to participate in weekly occupational therapy as well as utilizing an auditory FM System in school to help him be successful.

As a mother I have left two jobs in order to have the flexibility to be available to attend multiple weekly appointments. I have created a new business to supplement my children’s therapies and meet some of their sensory needs. I have replaced furniture, fixed walls, held my children, cried alone, cried together, lost friendships, found new supports through local and online support groups, attended multiple school meetings asking for school supports, spent hundreds of hours filling out paperwork for yet another provider or government program, and fought for understanding.

I love my children deeply and know they are exactly who they are meant to be. I will continue to work to provide my children with all of the services they need to be successful. Sometimes that means more paperwork and meetings and long waiting lists, but as a mom I am prepared to work just as hard as my children do.

Jen Johnson is founder, president and CEO of The Sensory Playce – Gym for Kids in Boise.

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