What about the rest of us?

Five years ago, when my oldest child was diagnosed with a rare neurological disorder called Rett Syndrome, I was devastated. We had already been balancing Early Intervention play groups, speech therapy and occupational therapy. Then we had to add to that balancing neurology, genetics and developmental pediatrician appointments; not to mention the add of managing seizure's a few months later.

I cried a lot in the first year after she got her diagnosis, and still do from time to time. I adjusted to the new "normal," as much as I could as time went on. One day somewhere in the journey, everything around me started to fall apart. We were given a diagnosis, referrals to new doctors and instructions to continue Early Intervention services. All those doctors and therapists we saw, and no one prepared me for what was to come next.

No one told me that having a child with special needs would effect every single aspect of my every day life. I had no clue the effect it would have in my relationships, my time, my state of mind, my ability to stay in control of my emotions and my dreams. Some doctors do a great job of gently giving parents the news about a diagnosis. Most make sure you have all of your ducks in a row to meet your child's new set of needs. Then, they fall short. Parents are left to discover for themselves that this new world that they are about to discover is going to turn their own world upside down. No one tells you that the divorce rate in families who have kids with disabilities is way above the national average. Just think...Some reports say that in a family with a child with Autism, the divorce rate is 80-85%!

Where do we go from here? Who do we reach for to make sure our own needs are met? How do we balance the needs of our child, with the needs of the rest of the family? How do we keep the emotions at bay, and remain in control of our own lives? I hope that by sharing some of my own journey (and other's if I can talk them into it), you will be able to get some of those questions answered. Until then, remember that the world of special needs is your new world. Instead of leaving the old world behind, begin the journey of merging the two worlds.