Doctors consider my little boy, Magnus, "medically complex." He also falls in the category of "failure to thrive" because of his numerous physical, developmental, and neurological impairments.
Play to Thrive
Despite his daunting label and diagnosis, our family wants to provide Magnus with every opportunity to "thrive" like his typically-developing peers. To me, that includes all facets of life, even play!
Toys developed and sold specifically under the "medical special needs" umbrella are often marked up and expensive. As a medical mom - on a budget - I've had to become creative with the way my family plays (and it doesn't always include toys).
"...although he cannot see what's in front of him, engaging his sense of touch is a form of learning and play."
Magnus is visually impaired, non-responsive to sound, and doesn't display any gross or fine motor skills. We don't know the extent of his sight and hearing (if he has any at all), but we do know that Magnus can feel through nerve conduction studies.
Sensory Stimulation with a Limited Skill Set
Like many families with special needs children, we are challenged to work with the skill sets we do have versus what we don't have. Because Magnus cannot utilize his hands to reach or maintain a grasp, independent exploration is impossible, but we can offer him sensory experiences in spades. When I say 'we,' I mean not just us (his parents) but all of his friends and other caregivers, too.
For example, when the infants in his class are seated around a communal activity table at Magnus' daycare, you'll always find a teacher sitting beside him. The teacher gently supports his elbow, guiding his hands and fingers to open up and feel whatever the children explore that day. The staff understands that although he cannot see what's in front of him, engaging his sense of touch is a form of learning and play.
Magnus has experienced the sensation of painting with a brush, having his hands covered in cold, slimy wet paint, and even placing his palms over a freezing block of colored ice. Sometimes 'playing' for him is as simple as feeling a variety of differently sized, smooth rocks versus the prickly sensation of a fake grass mat! Every day, the teachers adapt his 'play' to include him with his peers, no matter the activity.
Precious Play at Home
On the weekends when Magnus is home with us (Mom, Dad, and older sister, Kylee) - rain or shine, we try to take Magnus on a walk outside in his wheelchair stroller. Cognitively, we know he doesn't identify with his surroundings, but the change in the environment offers fresh air and, more importantly - added sensory experiences. He may not be doing cartwheels or running through a field, but Magnus still gets to be on the move while feeling the sun's warmth on his face or the breeze blow through his hair. He senses the bumpiness of the ground beneath him as his padded ride travels over the gaps of the sidewalk.
On gloomy days, we play indoors. At home, part of Magnus' physiotherapy involves a standing frame. With the assistance of a piece of medical equipment such as this, he can weight-bear on the bones in the lower half of his body - something he wouldn't be able to do on his own. Not only does this equipment allow him to stand tall, but because the frame is on wheels, it has allowed him to experience the joy of dancing with his sister!
We watch as she tows him by the arms back and forth. She holds him by the hips – swaying him (and his stander) side to side. As I watch them dance to the music playing in the background, my mama-bear heart swells, and I get misty-eyed witnessing such a beautiful moment. I think about how I never imagined this particular scene when my husband, Luke, and I envisioned our future family – when I pictured my two kids playing. But it's priceless and magical, all the same.
Truthfully, I will admit that life with Magnus can be complicated. There is no shortage of health hurdles, doctor appointments, prescriptions, and therapies. Lengthy medical costs associated with these things will always come first, but we always prioritize providing Magnus with the experiences to thrive.
Families like us learn to appreciate the simplicity of having our human senses intact. We do our very best to heighten whatever ones our children have been blessed to have. When you distill 'play' down to its very core – it should always be accessible to all.
And for me, Magnus will never be classified as "failure to thrive" when it comes to his ability to experience play.
Tiffany Yu is a mother to two beautiful children, both of whom had unique medical journeys that thrust Tiffany into the world of special needs parenting. It is because of her profound experiences in this complex-care world that Tiffany has been inspired to write and share about their family's journey. Her wish is to inspire hope and gratitude to those raising children within the medical community, and to give insight to those who are not.