Every child deserves the opportunity to grow and develop to their fullest potential, including children who have or are experiencing medical issues and subsequent needs.
These children may require unique care specialized to their individual medical needs. This care might go beyond the support we might typically provide during daily activities and routines. However, we must remember the importance of continually offering a variety of experiences to optimize a child’s development and relationships.
For example, if a child is receiving their primary nutrition from a feeding tube, they can still participate in the family meal. They can sit at the dinner table with others, explore various foods during the day and partake in food preparation when appropriate. Understanding how a child’s medical needs may change forms of care, and recognizing when they do not create restrictions on daily life, is paramount as a caregiver.
5 Ways to Support Children With Medical Needs
1. Offer a wide range of experiences. When appropriate and possible, provide experiences that you would offer a child without similar medical needs. Children with medical needs can often participate in many activities if only given the opportunity. Sometimes we don’t know if a child can participate in something until we try. To begin, identify the activity or experience and how your child might most safely participate (i.e., feeding themselves, swimming, going on an outdoor walk, getting dressed, etc.). Learn to recognize when modifications may be needed to make activities and routines more accessible.
Children with medical needs can often participate in many activities, if only given the opportunity. Sometimes we don’t know if a child can participate in something until we try.
Reaching out to professionals in the community who understand your child’s unique needs and have experience developing modifications can be incredibly valuable. These professionals might include a pediatrician, developmental pediatrician, occupational or physical therapist, speech-language pathologist, feeding specialist, dietitian, educator or infant and early childhood mental health therapist.
2. Offer plenty of time for thoughtful interactions. Too often, parents can become consumed with the essential medical needs of a child. This makes sense as this care is what most likely keeps a child alive and healthy! However, sometimes our interactions can become more of what we are “doing to” a child rather than what we are “doing with” them. Regular and frequent positive interactions are the primary way to best support their complete development. Furthermore, these positive and thoughtful interactions are a primary way caregivers can reduce the impact of challenges and stresses a child may experience.
No matter the routine or activity, providing it “with” the child, using thoughtful intent and warmth, is key to growing healthy and socially strong children.
- Talk to your child about the day or their favorite toy or book while providing their tube feeding.
- Calmly and respectfully share with your child why a medical procedure is necessary and what will happen next.
- Provide moments of gentle and loving physical touch that feel positive to your child before and during these procedures.
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3. Give yourself time and space. Caregivers often give and give and give to others, including children, and forget to give back to themselves. Caregivers’ emotional tanks need continual replenishment to fill the emotional tanks of their children. Children with specialized medical needs can require a lot from caregivers.
Therefore, it’s vital for a caregiver to purposefully identify their own needs to refuel. This might include taking small moments throughout the day for a cup of coffee or time for your own nourishment, a quick walk outside or a shower. Additionally, tapping into external supports such as family, friends, respite care providers or other community organizations is encouraged.
4. Practice flexibility and patience. Learning how to best support a child with medical needs can sometimes be a process of trial and error. Finding that “just right” approach or modification may take ample amounts of creativity as well as the flexibility to truly see what is and is not quite working. Holding this in mind, creating space for changes and being open to necessary adjustments is essential.
5. Practice positivity. Maintaining a positive outlook can be a critical element in the journey of supporting a child with medically complex needs. This can be hard in challenging times. One way in which we can remain positive is by offering ourselves grace and kindness as caregivers. Every caregiver wants to do right by their child. Furthermore, every caregiver is doing their absolute best. Remembering these deeply essential thoughts and holding ourselves with a compassionate and positive lens is powerful — not only for ourselves but also for our children.
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All parents encounter challenges as their children grow up. And sometimes, issues may arise that leave you uncertain as to how best to respond. But not every issue requires therapy or counseling. The PACE program is here to help during those times.