A Gift in an ETR Meeting

When you receive a brain diagnosis with a poor prognosis for your unborn baby it's future blurring. At twenty weeks pregnant with Cayman an ultrasound gave us the news of the now very common to us word: Hydrocephalus. It's an accumulation of extra fluid in her head compressing her brain, damaging it. It was hard to believe anything was that dreadfully wrong even though I could see it on the screen, a dark area filling the space within her head that showed very, very little brain tissue. There she was tucked within my body, moving, and growing. Every choice I made every day was with her in mind, loving her, and caring for her. As her mom I was suppose to protect her, keep her from harm, and I couldn't do anything to stop the hydrocephalus from damaging her precious brain. Prayer was my tool; my faith in God. He gave me strength to keep planning life for Cayman even though any day it might change and it all be taken from me.   I heard some great advice during those early days: dump all expectations. The baby I was planning to have, the things she would do, the picture I had of my days as a mom; everything. Emptied out. In doing so anything we would get back was a gift: this day, that heartbeat, that breath!! Holding her head up, drinking from a bottle, laughing, sitting, walking, signing, speaking, asking questions, reading, writing!! All of Cayman's life has been a surprise. We couldn't imagine it. We sit on the edge of our seats waiting to see what else she will do. Finding so much to celebrate; the joy of the little things. Today we had Cayman's Evaluation Team Report meeting. The ETR is done every 3 years. It is what determines a child's eligibility for special education services. It takes the complete picture of a child's abilities as they relate to their education performances and makes recommendations on how to meet these specific educational needs.  I'm still glowing over today's amazing meeting. We sat around a large conference table as we've done numerous of times before with many of the members that make up "Team Cayman" at her school. These special people are part of my village. They bring their best every day to help my girl succeed. Some of them have known Cayman since she was 4 years old in preschool and most of them have been with her since Kindergarten. Cayman is now 8 and in the second grade. The assessment of Cayman's abilities has always easily qualified her for several special education services such speech, OT, PT, audiology, Adaptive PE, Intervention Specialist. From the beginning Cayman has had long lists of people she has needed to help her. Today that list was shortened by one - Physical Therapy! That is HUGE for Cayman! It shows how far she's come! It's not at all that she is now as fast as her peers or she has the lightening reflexes. These were never the goals. Most of what we strive for Cayman are safety and independence. She's met all of these types of goals in physical therapy. She can get up from a seated position on the floor with her arms full, where once she needed those arms to push herself up for balance. She can carry her tray of food and navigate the cafeteria independently. She can take care of her belongings at her locker and move about a busy hallway with obstacles to step around while carrying her school supplies. She flies up and down stairs with ease. This is not to say she has mastered everything in gross motor. She still has strength and confidence to gain in locomotive skills. These will continue to be addressed in adaptive PE and will come with time and maturity. The time she would have spent in PT at school is now more time she will get in the classroom, focusing on academics. This is such a big testimony for Cayman!! It took me on a journey back to the beginning, the place where I emptied out expectations. The memory of her holding her own head up for the first time at 6 months old, sitting independently at 18 months old, crawling at 2 years old, walking and talking at 4 years old. It was a slow, long beginning. The past 2 years the pace has changed, like a switch flipped to hyper-drive. All of us around the conference table said where she was two years ago heading into kindergarten, we could not have imagined she'd be where she is today. She's made huge strides! Gifts we are getting back!