The Daily Mail response

This being Down syndrome awareness month, I feel I have no choice but to come out of my blog-coma and continue to educate and dispel this ridiculous notion that Down syndrome is any kind of “death sentence”.

One month ago, my family participated in the Step Up for Down syndrome Walk in our town.  It was our second year participating and since I’m now a seasoned Down syndrome veteran (wink, wink) I was in a better place to observe and enjoy rather than grasp desperately for comfort and “normalcy”.  The weather was awesome, our supporters were amazing and David basked in the attention.  As I looked around at the participants, I realized there were a few distinctions.  I don’t know if there’s any other condition with such a physical representation of growth, change, education and awareness.  I broke it down mentally like this (disclaimer: this is my OPINION and in no way based on research; strictly observation and my own personal experience).

There seemed to be 3 distinct “groups”.

Group one: 25+ years old “Ok, you’ve been born with Down syndrome & we’re not going to institutionalize you anymore, but we have no idea what to do with you so you’ll have to figure it out on your own.  Good luck parents.”

Group two: 10-25 years old “Ok, you have Down syndrome and we’ll let you come to our ‘typical’ schools, but we’re not exactly sure of any programs or services that will best help you and we don’t have the resources to try.  Come join us, but still . . .  good luck parents.”

Group three: 0-10 years old. “Ok, you have Down syndrome.  That means you have your own unique set of challenges and skills.  Here are a ton of programs, resources, services, support groups, books and research that will help you.  If you can’t find what you need, let us know, we’re here to help.  Parents, let’s work together.”

I get that these are gross generalizations and I am in no way insinuating that there is no hope for older individuals with Down syndrome or that certain programs and individuals have not been working for the greater good for years.  It just seems to me that the younger kiddos with Down syndrome were truly thriving.  It was clear that there is a new generation of Down syndrome awareness and support.  One that promotes acceptance, encourages strengths and uses every resource in their toolbox to make sure that individuals with Down syndrome can be the very best they can be.  Just like every other child on the planet, kids with special needs deserve to have the opportunity to be the best they can be.  It may not be a rocket scientist or a neurosurgeon, but maybe it’ll be an artist or musician or teacher or policy maker.  I’d be pretty dang proud if David looks at me one day and says, “Mama, I love what I do and I’m good at it!”  Isn’t that all any parent can ask for?

I pity the British woman whose son was born in an era when Mongoloid was still an accepted term.  I can’t image she received any support or resources and I can only hope she did the best with what she knew.  My gut is that if she had been educated and used her mama bear instincts to fight for her son, he would be in a very different place today, and likely so would she.

So to all the parents fighting the uphill battle of autism, dyslexia, Down syndrome or other “disabilities”, I say, Fight on!  Give your children every single opportunity you can.  Search high and low to make sure each & every one of your kids reaches their full potential.  If at the end of our lives, we can say that our kids are the very best versions of themselves, doesn’t everybody win?

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The (second) walk

First of all, happy Down syndrome awareness month!  I feel like our lives are basically a walking advertisement for the awesome-ness that is Down syndrome so I don’t know how much I’m going to post, blog or fawn over this month.  I’ll post when I feel inclined but may not make too big a deal of it.

Now, onto the fun stuff!  The Step Up for Down syndrome Walk!  We had ours in Denver last weekend and it was awesome!  We had almost 40 walkers on our team and raised just under $1,500.  The top team raised $15,000 so you know . . . we almost got there 🙂  After our cluelessness last year, we wanted to be bigger and better this year.  Mission accomplished!  We had an awesome, enthusiastic team, yummy food and a great spot.  Team David’s Giants were supportive and excited, but the real treat was that the man of the hour, David himself, was there!  Last year we were so honored and sad to walk for him instead of with him.  This year he made up for it.  He fell asleep about halfway through the walk but woke up in time to enjoy food and friends after.

Each year, we have plans to expand.  This year, our focus was on food so people could stay and enjoy.  Next year, it’ll be shirts; the next, a fancy sign?  Who knows?  All we know is that this is one tradition we are so happy to be a part of and an annual event that hopefully by the time he’s a teenager, makes us the top raising team?  Definitely a goal worth striving for!

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