This is a guest post by Amanda from @roryblakeisgreat
I want to start this off by saying, we don’t have to be perfect to be effective. I say this to myself 100 times a day in reference to working with Rory’s motor development and I’m sure I will in the future as we enter the schooling years. As long as we try our best and come to each therapy session with a hopeful heart, patience, and presence we are winning.
Currently, we are focused on transitions. Rory can sit, roll and bend at the waist. She is trying to master bending her knees, hinging at the hips, sitting up from a laying position and coming out of a seated position properly. She sits with a very wide base of support, at times almost in a full split and T-rex arms. Her legs are extremely rigid, locked out so tight they turn a bit purple. To help her avoid sitting in splits while upright and w-sitting when propped on her knees we use hip helpers. These special shorts are made of spandex with webbing between the legs.
We work with an Occupational Therapist for oral motor development and fine motor skills and a Physical Therapist for gross motor skills. We see PT every week and OT every other week. The therapist trains me on interventions and it is my responsibility to implement them with Rory as often as possible. I do my best to have formal therapy sessions with Rory 3 times a day for as long as she will tolerate the “workouts” up to 15 minutes.
This is all greatly influenced by her sleeping routine and if my 4-year-old son is home from school. Before having Rory I worked full time, which gave me a wonderful sense of structure and routine. Becoming a stay at home mom has thrown me off big time. Routine seems to be a distant memory and structure forget about it! I noticed the days were getting away from me and I wasn’t hitting my 3 times a day goal.
I decided having it written out in front of me in a “to do list” manner would help. I currently use a dry erase marker writing all of her therapies on the big windows in our living room. Checking the box off feels good and when I’m ready to throw in the towel seeing those empty boxes motivates me to get on the floor and do the work.
If we miss formal routine based therapy, I try hard not to beat myself up. We are on the floor playing many times a day and essentially play is therapy. Below I have shared photos of our current therapy exercises. What are you doing at home? What are your favorite resources? If you would like to follow us as we navigate life after a birth diagnosis, visit us @roryblakeisgreat on Instagram. (Note: I am not a trained therapist, please always consult with your team on what would work best for you and your child)