Running For Research - PWSIndividuals with PWS usually exhibit cognitive challenges, with measured IQs ranging from low normal to moderate intellectual disability. Those with normal IQs often exhibit learning disabilities.
Clementine entered the public school system at age 3. She qualified for early preschool through the Exceptional Children’s Services( formerly known as Special Education) in our county. Her first class was a mixture of typical 4 year old kids and children (aged 3 and 4 )that required special services. Before entering the classroom she had to qualify. Qualification was based on psychological testing, functional testing and diagnoses.
As any parent of a child with special needs will tell you, testing is a mixed bag. You want your child to score as close to “average” as possible because it indicates less cognitive impairment. But the closer to average you score, the fewer services you may qualify to receive. Testing is an arduous process and the results are somewhat unreliable. The results give you a snapshot of your child’s abilities on that particular day. They are a good guide but should not be considered the definitive picture of abilities. I’ve learned over the years to pay attention to the scores but only as a vehicle to educational services.
After completing pre-school, she was moved to our home elementary school and placed in a General Education class. Clem was provided special instruction time through both one on one instruction and small group instruction. Clem also received Speech Therapy and Occupational Therapy through the school system She was assigned a one on one aide to help her focus academically, manage her diabetes and to make sure she had security around food. Ms. Teri is Clem’s aide and she is still with Clementine today. We owe Ms. Teri a tremendous debt of gratitude and we hope she doesn’t retire until Clem is out of school!
At the beginning of the 2020 school year, we made the decision to move Clementine to another elementary school within our county that could provide more one on one learning than was available at our home school. About 75% of her instruction is in a small classroom setting. She is in a class of 5 children with 1 teacher, 1 parapro and of course, Ms. Teri. Clem receives ST and OT through the school and also privately.
Like any child, Clementine has her strengths and weaknesses. She has strong comprehension skills when listening to a story or a lesson explained by her teacher. Clem has always had a large vocabulary for a child her age and almost always uses new words in the appropriate context. Her imagination is fantastic and the stories she makes up are funny and descriptive.
Despite this, Clem struggles academically. Math is very abstract to her and most concepts are very difficult to learn. A skill must be repeated MANY times before it is mastered. Reading is also something that she finds hard. She is several grade levels behind and progress is slow. But there is progress.
Clem does very well in science and social studies. The school she attends helps her learn in a way that makes sense to her. She is orally tested and almost always brings home As and Bs. These tests are Gen Ed tests, not SPED tests and she is always very proud of herself when she does well.
Overall, we are very grateful for the public school system we have in our county. Clem has always been treated fairly and the right level of services have been made available to her. She loves going to school and although very shy, has made friends in her classes. We can only hope that this positive outlook continues as she gets older and school becomes harder. We can only hope that this doesn’t change when she becomes hyperphagic. We can only hope she doesn’t develop challenging behaviors that put her at odds with her teachers and classmates. We can only hope.
We can only hope. But while we are hoping, we are also taking action to tilt the odds of success in our favor. We are doing that by fundraising for PWS Research at the University of Florida
