The tapestry of the life of a medically complex family

Nearing the twins birthday has me thinking about their next Individualized Education Plan meetings. Throughout life, my children have faced developmental challenges in addition to their medical ones. My children have several diagnoses of developmental significance, including Cerebral Palsy (CP), in addition to their medical ones of “Chronic Lung Disease of Prematurity” and “Gastro-esophogeal Reflux Disease” (GERD). From an early age, right after discharge from the hospital, my children have participated in several therapies to help them to ameliorate these challenges.

Beginning far behind the 8-ball as 27 weekers at 1 pound-12 ounces and 2 pounds-2 ounces, my kids have come a long way to the thriving, speaking, growing preschoolers they are now. When they arrived at MY home at 14 months, Tav still played almost exclusively with his hands and lay on his back unless propped or held in another position. Adrien had yet to walk but was cruising along furniture and sat to play by banging or stacking toys. Shortly after moving in, Adrien began to walk and Tavi began to reach for and grasp toys. The months of Early Intervention in their foster home and its continuation here had begun to pay off.

After their first airway reconstruction surgery, to correct the severe narrowing under their vocal cords, the Early Intervention team expanded to include Speech Therapy and Physical Therapy in addition to Occupational Therapy. These therapists saw my children through many milestones, from becoming independent in sitting to standing to walking to jumping in physical development, from learning to voice sounds to babbling to vocal words in language development. Although my kids made wonderful progress in Early Intervention from birth until the age of 3 years, they continued to need services when they turned 3 to support continued growth and development in these and other skills.

The school district met with me and the Early Intervention team and agreed, in the case of my children, that they would best be served by continuing in-home services to avoid exposure to colds and other illnesses that could be life-threatening to them. Wonderfully enough, the Early Intervention team that had been working with them included members that could contract with the district to continue to provide services for my children. These people, PT, OT & SLP, brought a skilled team to our home to work with my children on moving forward. For the first year both children received OT & Speech services, and the PT came to work on strength, motor planning and muscle control with my son. This past year, my daughter continued with only speech services from the SLP, needing to work primarily on voice quality, rather than vocabulary and language development.

As we hit the mark for their third IEP meeting, I view my children’s progress as reason for celebration. My daughter may no longer qualify for services of any kind, although she continues to have a soft voice and may need more work on breath control when and if she has her trach removed some years off in the future. My son now walks, runs, draws simple people, uses scissors to snip paper and speaks in complete sentences when he is calm and comfortable with the person he’s talking to. He still struggles with strength and endurance (common across all 3 of my younger children), grasping crayons and using enough force to make clear marks on paper, eating textures or solid food and communicating clearly.

Both children continue to have health needs that limit their access to participating in groups of children, so neither will be enrolled in a preschool class. It is wonderful to have 3 preschoolers in the same home so we can do group activities and they can learn the give-and-take of sharing and playing with others. During the upcoming IEP meetings, I will work with the team to design an educational plan which will help both of my 5 year olds to continue to grow and flourish. Will it be one plan? Will there be two? That’s the great thing about working together with a team; different opinions and impressions will be considered and we will hopefully agree to the plans necessary to help my children continue to move forward in their development.

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