Ds convention

This last weekend we went to the National Down syndrome Congress Convention in San Antonio.  Mark was supposed to go with me but he wasn't able to get off work so my mom came with me instead.  It was an amazing conference!  I walked away feeling.......excited, overwhelmed, sad, more at peace, exhausted, thankful, more in love with Madi.......and then excited, overwhelmed, etc.etc. all over again.

Let's just say I had very conflicting emotions all throughout the conference.  The first day, we attended a pre-conference session about speech intelligibility.  It was an all-day sessions put on by the well-known Libby Kumin as the speaker.  It was a VERY helpful seminar.  Most of the information was not necessarily relevant to Madi right now but will be in the next year or so.  I took lots of notes and I will have lots of information to refer back to when it comes to the time when Madi is starting to speak.

Libby also talked a lot about Childhood Apraxia of Speech.  Now, that is kind of an overwhelming topic. Let's just say that I hope that we never have to go down that road of dealing with it.

Overall, the first day was pretty good.  It was a little emotional and overwhelming at times for my mom but I seemed to handle the first day pretty well.  The 2nd & 3rd day were definitely a different story.   I will say, though, that it was the beginning of some revelations for me. (which I will talk about later.)

The 2nd day, we went to a session on OT, another speech session by Libby and a session on medical conditions to keep watch for by Dr. Brian Skotko.  Dr. Skotko was wearing his funky pants......for all of you that know what I am talking about.  :)  BTW......just so everyone knows......I guess the American Academy of Pediatrics changed all of the recommended testing and guidelines for our little ones.  This change occurred about 1 week ago.  The updated rec. are not available online yet but should be on the NDSS website in a couple of weeks or so.  (FYI:  They have eliminated the Ds growth charts!)

The 2nd day was the beginning of the downward spiral for me emotionally.  For one thing, I was tired.  Both physically and emotionally.  Here's where I let you in on some of my revelations about myself.

First and foremost.......I have been in denial.  There.....I admit it.  I didn't know that I was in denial.  But, when you really look at the "guts" of it, I have been.  I KNOW that Madi has Down syndrome.  I KNOW that she is going to be delayed.  I KNOW that she will do things in her own time frame.  But.......and this is a huuuugggeeee but.......I have always felt that if I do enough therapy and do enough of the right things, she will be just fine.  She will be just like any other "typical" person.  When I think about that statement, I realize how silly it is.  She will be whoever she is.  Just like Taylor will be whoever Taylor is.  And I am who I am.  We are all different and unique in our own ways.

But, it hit me there, that she does indeed have Down syndrome.  It does NOT define her but it definitely will affect her throughout her life.  Both good and bad.

The whole thing was kind of an emotional mess.  I had to face my denials and the possible realities of the future.  But, it was balanced out by the wonderful people I met.  I am definitely part of "the club" now.  Complete strangers were so welcoming to me......giving me advice, answering my questions, and letting me cry on their shoulder and giving me hugs.  I met some amazing people!!!

And it was amazing to see all of the teens/young adults with Ds!!!  It was so insanely cute......I saw this boy and girl who were probably in their early 20's flirting back and forth with each other!  Watching the two of them filled me with such joy!!  I already can see that being Madi and some cutie some day!!!

The convention was an amazing experience!  I am already looking forward to next year and going as a family.  I truly see it being something that we attend every year, not only for the educational part of it, but for the bonding and rejuvenating part of it.  It gave me that little extra drive to keep at all the hard work I do with Madi.


If any of you have any specific questions about the info I learned, just email or message me.  I have a lot of information about speech intelligibility, apraxia, oral motor therapy, and talk tools.  I would LOVE to share the info with everyone!!