On March 21, 2012, ( World Down Syndrome Day) I launched “The UPside of Down.” What is it? Simply put, it is going to be everything I wish I had known from the moment I found out Ella has Down syndrome to now, nearly eight years later. And I’m going to share it with every other new parent, grandparent, friend, sibling, teacher, doctor, and therapist who wants to know about Down syndrome.
When Ella was born, I absolutely hated the fact that she was born with Down syndrome. I first had to go through a grieving and acceptance process. Then, I had to get up off the floor and learn about Down syndrome, since even my medical training did not prepare me. I read books, attended conferences, talked to other parents, traveled to meet other kids with Down syndrome, researched therapies, and bought lots of stuff. I learned how to become a teacher and a therapist. I made the toys and other products Ella needed that I couldn’t find in a store. I found the right shoes, foods, therapists, and even the right high chair. I created hundreds of files of information. I totally immersed myself in the world of Down syndrome.
Learning about Down syndrome was hard. It was very time-consuming. I had to piece together everything I needed to know to raise my child. Learning about Down syndrome became a full-time job.
I wished there was just one place where I could learn what I needed to know. I wanted it to be easier. I spent so much time researching Down syndrome that it took time away from being with my baby. I also wished I had a friend to talk to that had been through raising a child with Down syndrome. A really close friend – the kind that tells you straight up how things are and gives you her very honest, sometimes brutal, opinion.
With many nudges from “The Universe” I finally realized that I need to create this thing that I needed and know so many other families need. I want to share what I learned as a mom and doctor. I want other new moms to have someone they can talk to no matter what they are feeling. I want new parents to have answers to the questions that keep them up at night. I want to create a Tribe where we can all share ideas, experiences, thoughts, and feelings. One more thing – I want to change the way the world views Down syndrome.
I’m totally overwhelmed. I have this fountain of ideas that keeps my head swimming with all the things I can do, even though I don’t know how to bring all of them to fruition. My website, blog, face-book, and twitter are launched. I’ve been giving lectures and workshops for seven years. But there is so much more to come, including a message board, personal consults, therapy and educational products, a newsletter, and even a book.
I’m impatient that I can’t get it all done and out there to you at once ( I would love to quit my job to have more time, but maybe that isn’t the best idea….)! Please keep checking back; I’ll try to give you as many tips as I can along the way.
In the meantime, I don’t mind asking for help. I would greatly appreciate tips from anyone who knows about creating webinars, podcasts, setting up an in-home video studio, getting a therapy product produced, or any other technical aspects of launching this entity! Also wanted: recommendations on your favorite teas – I am definitely going to need more caffeine.
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