Chasing around a 20 month old toddler must be tiring. I can only imagine the type of stamina you need to keep up with the plethora of energy that is ever-flowing through those little bodies. While I have a difficult time relating to the day to day life with a typical toddler, I am busy caring for a little extraordinary 20 month old myself. My son, Johnny, was born with a rare neurological condition called hydranencephaly. Although my days aren’t filled with cleaning up after apple juice spills and stepping on toys left in the middle of the floor, they are filled with many challenges of their own.
The diagnosis of hydranencephaly is a package deal. The package of a different life with a “grim future”, countless limitations, a lot of doctors’ appointments, adaptive equipment, and, most importantly, a cute, smiley little boy. That little boy has a lot of different needs than a typical toddler.
Many mornings are spent with a therapist of some sort. He sees occupational, physical, and music therapists and typically has two to three appointments with them a week. On the mornings that aren’t spent with a therapist, it’s our job to make sure he gets his morning “work out”.
We have been doing therapy with him since he was just a few months old. In the beginning, doing therapy with Johnny was a chore. Johnny’s screams probably made the parents and the children in the waiting areas anxious, while our hearts broke a little more each time. Sometimes we wondered if all the trouble was worth it. If he was so miserable, should we continue?
We slowly learned ways to distract Johnny from the discomfort of stretches and muscle strengthening. His therapist learned his favorite toys and always had them ready for us upon arrival. As Johnny continued with his daily regimen, he started hitting milestones that seemed out of reach. Seeing these improvements and Johnny’s growth we knew we were on the right path and that the efforts were worth it.
When Johnny was about 13 months old, he started seeing a music therapist. She taught us ways to incorporate the toys into the stretching instead of just distracting him with them during the stretches. Now, we often use drums for him to hit or kick, hand cymbals to help him learn to bring his hands to midline or clap, and Johnny especially likes his waves drum because it’s fun to look at and it makes cool sounds.
After morning therapies, Johnny has time to play. Typically, we try to have him play on his own, in his own way. Johnny doesn’t have consistent purposeful movements of his arms and hands, so simple toys that react with touch helps encourage him to move those little arms. These playtimes also help him learn cause and effect, which may one day be a gateway for communicating using different communication devices!
Another obstacle Johnny faces is the inability to stand. Since he lacks the coordination and muscle tone it takes to support himself, he is unable to stand without additional support. Because standing is beneficial for his health and essential for growing little boys, he uses a device to help him stand. He uses this stander everyday, and spends up to an hour in it at a time. This is typically right after naptime, when he is fresh and his stamina is high. Toys are crucial during his time in the stander to keep the time fun and they help allow Mommy to get some housework accomplished!
During the evenings we usually do sensory play. This involves many different toys with different textures. We try to keep each daily session focused on one texture or feeling. Touch and feel books, fabric toys, and kooshi ball toys are all fun things for Johnny to feel.
Our far from typical days are centered on our little extraordinary guy. By learning to add appropriate toys into the right parts of the day, we usually have a playful, happy boy to watch grow and thrive. Before we learned to incorporate toys into our daily activities, we spent a lot of the time trying to cheer Johnny up, or distract him from the task. Now, he is involved in what he is doing, likes it, and I believe he even now thinks his therapies are just another playtime!