I’ve spoken a bit about some of our experiences since Elijah’s diagnosis on my personal blog, however I wanted to create a blog that was specific to Fragile X. My hope is that our experiences can help other parents who come after us to navigate these sometimes scary waters. We often still feel hopelessly adrift, but there are some things which we’ve found have been tremendously helpful with Elijah and maybe they will help other children with the same issues.
I intend to post about toys that are particular favorites, when Elijah hit certain milestones, and in some cases howe we finally helped him to them. I also want to talk about challenges we are facing, discoveries that are occurring in the field and our own experiences dealing with the intricacies of insurance coverages and the school system. I’m not sure that people outside the special needs community have any idea of the challenges faced by parents that have little to do with their child’s behavior and everything to do with the sheer overwhelming nature of what it takes to ensure your child receives the services they need.
I can’t promise that my blog entries will always be positive, I’m not sure when the grieving process gets easier, but I know that I’m definitely not there yet. Overall I am very lucky because Elijah is a wonderfully happy and engaging little boy and most days it’s easy to find the silver linings, but it doesn’t change the fact that the sky is still mostly cloudy. But then if I was incessantly cheerful there would probably be some mother reading who had to feel guilty when they had a bad day, so this blog is meant to serve as a “warts and all” account and I hope that it is useful somehow to someone, but even if it’s not, hey, it’s free therapy. 🙂