Recently I attended the Discovering Our Connections Virtual Family Meetup hosted by the GFPD. I initially attended in support of the GFPD and a desire to learn anything and everything I can to assist my son, Judson. Judson recently celebrated his 6-month birthday and wasdiagnosed with a peroxisomal disorder in the Zellweger spectrum at 22 days old. At the time, we did not know much about his disease or what we could expect or do to assist him.
Through the support and resources of the GFPD we learned that his vision and hearing may be affected, although we are still unsure as to what extent. As a family, we have struggled finding ways to engage him in learning and interacting with us through play.
Before the GFPD virtual meetup we had started introducing a resonance board as part of his therapy and play. We noticed small improvements in his engagement and movement. At times while using the resonance board and a small toy making noise he would roll towards the toy.
Our physical therapist had then suggested building a “little room.” At that time, I had some basic knowledge of a “little room” through reading on Pinterest, and attending one webinar. However, one of the Discovering Our Connections presenters, Sara Edwards, provided a thorough explanation of a little room and additional developmental resources that were easily created at home. The presenter, Sara Edwards, who works for The Illinois School for the Visually Impaired, was able to explain the stages of development and how we could see our baby change and develop by taking a slightly different approach.
Sara shared how simple objects at home could be utilized, and how easy it would be to create a little room for our son. We then had the pleasure of watching GFPD Warrior Hans with his dad, Chris, show off his little room. I was so overtaken with excitement with how active Hans was in his little room. It was wonderful to see him so engaged. Watching another child with a peroxisomal disorder use this tool and gain so much play and engagement sparked my interest further. Chris explained how they created this space and important safety precautions to take.
After the virtual meetup, I was a mom on a mission. We were able to purchase all of the equipment from Home Depot and Michaels with curbside pickup! With a few cuts, a little assembly, and collecting toys from around the house that had otherwise been gathering dust, we had our very own little room.
Judson was able to try out his own little room for the first time on Sunday evening. We placed him on his side and he automatically became engaged by looking around, rolling to his back and making an audible sound of pleasure. Since introducing the little room he visually has become more active, continues to roll from his side to back, and as an added bonus: bigbrother Tucker likes to play and interact with him as well! This has been a big win for our family, and we send a huge thank you to the GFPD and presenters at the Discovering Our Connections GFPD Virtual Family Meetup.