7A- Tony Candel- Response to Jodie Gueneri

Jodi,

I really enjoyed your Critical Issue work on Spina Bifida. As an instructor working with students with autism, I understand the value of early intervention and have experience working with children with SB. On a (somewhat!) related note, my young daughter gave my wife and I the scare of our lives when our pediatrician expressed concern over a large, bright red birthmark on her lower spine when she was an infant. We were referred to Akron Children’s for a loooong ultrasound and lots of nail-biting. We were blessed that there were no internal malformations, but moments like that make us even more compassionate to parents coping with learning that their child may have special needs.

I was glad to see that you incorporated the importance of folic acid during pregnancy. In addition to the information you included, the history of the discovery of the importance of this supplement both before and during pregnancy to prevent neural tube defects and the public policies that have been implemented to support this is fascinating (see http://www.ncbi.nlm.nih.gov/pubmed/15129193 for more detailed information). Simply adding folic acid to prepackaged food resulted in a dramatic decline in reported cases of SB. This is an important component of the history of the disorder that should not be overlooked. If only all disabilities were as easily preventable!

It was interesting that you pointed out that while SB is not considered “curable”, you also stated that “the brain’s neural circuits which form the foundation for learning, behavior and health are very flexible and ‘plastic’ during the critical first 3 years of life.” Therefore, you suggest that early intervention may help to improve skills and functioning and improve prognosis despite the pervasiveness of the disorder. This is a very hopeful perspective that would be welcomed by families and stakeholders. In addition to physical and occupational therapy, I would point out that behavior therapy and early educational education opportunities would be incredibly helpful in addressing toileting, feeding, behavioral concerns, and potential cognitive deficits. I appreciate that you pointed out the grieving process that families experience and you suggest that they may need support as an entire family unit.

In addition to the discussion questions you posed, it might be helpful to ask what we can do (as future special educators) to help young children with SB? What educational strategies can be incorporated into early intervention settings for these children? What special challenges does this population pose for educators?  Overall, I was impressed with your descriptions and information regarding the disorder. Early intervention is such a pivotal time for all children, and it’s an opportunity for educators to collaborate with family at an early age to set the tone for the child’s education career.