Real life Down Syndrome Awareness
This is actually a phrase that I used in Google when I learned of our son’s diagnosis. You know what came back?
Nothing.
I figured it is high time that this question got a good answer. So when you want to ask, “My baby has down syndrome, now what? Here is your answer.
I have been vacationing to the beach with our growing family for years, after shepherding a crew of now 6 kiddos over a 15-hour road trek to my happy place, I think I have some tips to share, especially as I am also now the mom to a little one with special needs as well. I have learned over the years, please heed my advice as I have made the mistakes so you don’t have to. Here are my Top 10 Mom Approved Beach Vacation Tips from a mom who has been there…lots.
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I remember well that when Google and I became fast friends. It was the moment that I was alone after hearing “Down Syndrome” from our pediatrician. One of the top sites that popped up was the DSDN, Down Syndrome Diagnosis Network. I paused, did some reading and then a little while later, I reached out to the new parent support. It was then that I had my first contact with Jen Jacob. She is one of the forces behind the DSDN and she works tirelessly to advocate and connect parents who learn of a Down Syndrome diagnosis by connecting them with support from the prenatal through preschool years.
When I heard those words, Down Syndrome, referring to my own newborn son, I reached back into my memory and began pulling forward all the information I could recall. The pieces were disheveled, the files corrupted but from memory, I could recall that it was a genetic disorder, there were 3 copies of the 21st chromosome, there were obvious physical facial characteristics, speech delays and well…I had never carried on a conversation with someone who had Down Syndrome so likely they didn’t have the capacity to carry on lengthy conversations. I had many misconceptions, I had many stereotypes, but I also had some flat-out lies embedded in my subconscious.
I firmly believed, through the surges of salty tears that daily streamed from my red puffy eyes, that life as I knew it was over. I wouldn’t be happy again, I wouldn’t live the life I had come to love, my family would forever be sad and lonely because we now had a child with special needs.
Because I had never spoken with someone who had Down Syndrome I mistakenly assumed that there weren’t many articulate thoughts being spoken. I have now had the privilege of speaking with a number of really great people who make me smile, laugh, and WANT to be around them.
Look no further than youtube or A&E to the show Born This Way to see the possibilities. Not every person with Down Syndrome is capable of complete independence, but more seem to be than previously thought and the numbers are growing every day as we come to expect more.
There is a need for resources directed at those with Down Syndrome but they are worth it. We are now seeing the amazing benefits of early intervention and high expectations and these lives are worth it.
Can’t walk, can’t talk, can’t read, can’t write…the list goes on and on. There was a time in the history of the United States, and not that long ago I might add, where mothers were told to put their children with Down Syndrome into institutions and forget about them because they “can’t.” What we now know is that with early intervention they CAN.
So tell me, what did I miss? What other lies are there out there about Down Syndrome?
Yes, you read that right. Look no further, you have found The BEST guide to Down Syndrome Blogs on the Web. (disclaimer, if you know of a blog not listed, email us so we can see about getting it added in!)
If you are anything like me, you want to know about Down Syndrome from every angle, not just the terribly daunting information you may find on medically-laden sites. You want REAL information from REAL families living with REAL people who have Down Syndrome. That is what I wanted in the beginning, and that is what continues to inspire hope as time goes on. My goal was to pull together a list so that you don’t have to search endless keywords like I did in the beginning. That way it is easy for you to find HOPE with the click of a button. So, without further delay, here it is…
