Hello family, friends, and fellow fighters,
One of the awesome resources Florida has available is their Early Steps program. It is a no cost program that offers support for children 0- 3 with developmental delays, disabilities or certain pre-qualified conditions that put them at risk for delays. The hard part about Dravet, is even though it does cause developmental delays, it is so rare it is not on the pre-qualified list. Because of this, Dravet kiddos have to do an evaluation and be deemed delayed “enough” to qualify for services. Nova did her evaluation at about 18 months and was already scoring “low enough” at that time to qualify for Early Steps services once a week. We did Denver’s evaluation yesterday, and while she did score below average in the cognitive category, it was not enough to qualify her for the program. Most parents would probably be excited by this news, they would feel relieved that their child is “on track.” For us, it is extremely frustrating. Knowing that delays and regression go hand in hand with a Dravet diagnosis but not being able to do anything (through this particular program) to work on preventative techniques, feels frustrating. There is such a lack of resources for Dravet kids because they don’t “fit in” with other disabilities. We have an appointment with their pediatrician tomorrow and I am hoping that we can find some better resources the girls will qualify for. Early Steps is a great program, but it sucks that with something as inevitable as delays in Dravet you have to wait for them to get “bad enough” for someone to listen. Hopefully I will have a more positive update from their doctor appointment tomorrow. I will do everything I can to give these girls everything they deserve.
“And my God will supply all your needs according to his riches in glory in Christ Jesus.” Philippians 4:19
Keep Fighting,
Addi Epilepsymama
