The 800 Number Continued

Dad Love's the Idea

I have definitely decided to Start the "800" number campaign! After speaking with several parents, I know this is the direction to take the work in. As I have been compiling all of my work together to give to Dr's. Offices, I have been re-thinking a few things. First of all, The system of getting information out to Dr's Offices and Hospitals, has clearly not been working that great. Due to the number of parents who feel a little left out in the dark concerning Supportive, Educational material they receive at the time of Diagnosis whether it be the Hospital or Dr's Office. The major Down Syndrome Organizations do amazing work, and have made huge strides and also try very hard to make sure the correct information gets into parents hands, however, the current system is clearly failing still. Why? I think one of the major reasons is it all depends on Where you happen to live, and where your "local" organization is. Since most Local Down Syndrome Groups are Volunteer, a lot of times there aren't enough people getting the "message" out there! This is just a fact of life. If you live near or In a Bigger City, odds are much better that there will people there, ready to hand you information. Otherwise, you might not get so lucky.

Jaden Loves the Idea

With a Universal "800" number, any New or Expecting Parent can call, 24 hours a day, this could be a way to take the Uncomfortable, or intimidating feeling out of having to seek out information. If every Doctor's Office and Hospital, instead of giving folders, video tapes and brochures to parents at first, simply gave this One, Simple number to call, informing the parent that on the other end would be All the Newest, Latest, Information, and Local Resources in one place, I think it would be easier for Doctors, Genetic Counselors and Hospitals to remember to give it. ON the other end of the phone would be a Parent, with the Right, up-to-date information, answers, news, local resources and research. Also the parent answering would be able to share their personal experience if the Parent wanted to hear it or asked for it. The information given by the 800 number parents, will all be the same, and verifyed by a Dr. as to make sure everything was accurate and current.

Lyla Loves the Idea too!

Once the parent was ready, all of the proper information, and local support group information would be sent to the parent. But a Phone Call First, could really ease the minds of some new parents, especially if they don't feel like sifting through a bunch of materials right away. I know I didn't. I didn't even want to read all the Recommended books, and watch the videos, they still seemed rather depressing to me. I just wasn't ready when Jaden was a baby. I wanted to see how he would develop, instead of having a pre-conceived idea of how he would and wouldn't achieve milestones. As your child grows, I think you get past some of your old fears, however, it's a process, and all parents go through it differently. I think that is why this sort of thing might be a more "Modern" approach to handling the information. It takes a while for the Large Organizations to pass on information on changes, or policies and to change all their materials and literature. In my opinion, the books we have on Down Syndrome, still seem a little dated and discouraging in many ways to me. That is why a Number along with a Wesbite, would be a much easier way to keep resources very current for parents.

This is something that could make a huge difference in the Direction Down Syndrome Information is heading in. The Old Way, and Current way of getting information to parents, is still falling short, a New way, perhaps, needs to start. I bet there are a lot of parents out there who would be willing to answer the phone to help out a new parent! I know I would.