Saturday, May 7, 2011

A Day at the Down Syndrome Clinic

Yesterday Josie and I packed up the essentials and headed out for a LONG day at our local Down Syndrome Clinic.  While Josie receives medical care and therapy locally, she still makes regular trips to the Down Syndrome Clinic for evaluations and therapy by professionals who specialize in Down syndrome. 
Excited for feeding therapy!

From 10:45am to 5:00pm we had back to back sessions including feeding therapy, occupational therapy, physical therapy, speech therapy, and a consultation with a doctor who specializes in Down syndrome.  It was a great opportunity to acquire information about how we can help Josie maximize her potential. 
Josie giving Sarah, the OT assistant, the I'm-not-sure-if-I'm-going-to-smile-or-cry face

Josie was pretty cooperative for the most part - except for physical therapy.  She appears to have acquired my aversion to athletic endeavors and she cried throughout most of the session.  So much for skills and abilities!  Feeding therapy was particularly interesting for us, as we're working hard to get her off of her feeding tube.  After yesterday's session, we may end up changing our approach.  At this point, we're willing to try just about anything! 
Physical Therapy - right before the waterworks began

Our consultation with the doctor was the most fascinating part for me.  Remember in the FAQ's when I stated that many siblings of individuals with disabilities end up pursuing a vocation dealing with individuals with special needs?  Well, this doctor has a sibling with an intellectual disability.  We spent most of the session talking about sibling relationships and I found our conversation absolutely fascinating both as a sibling and an expectant parent.  She recommended the book Special Siblings by Mary McHughEmail me if you'd like to hear more about this topic and the advice I received.  I could go on and on...

We arrived home to find a package from our dear friend, Aleksandra (and her lovely family). This family was kind enough to let us stay in their home during the nearly two months Josie was in the NICU in another state and they will forever hold a special place in our hearts for this incredible act of kindness. Inside the package, was a fantastic book for Josie, written by The Pioneer Woman Ree Drummond (who also has a sibling with special needs).  If you haven't checked out her blog, you should (especially the "Mike" tab). We are big fans!
Josie cuddled up to her Daddy and he read her bedtime story

If you're interested in making an appointment at a Down Syndrome Clinic near you, the list can be found here.


  1. I have never considered taking Vada anywhere extra. She is doing so well and I have never actually had experience in or with special needs so it had never crossed my mind. I am looking into it now. Thanks for the info.!

  2. First of all, Happy Mother's Day, Little Mama!
    These clinics sound fabulous - and what a great 'verification' that you are doing all the right things and that you are feeling connected with other 'Downs Divas!'
    I have a question... do you think Josie cried during PT because it was just too overwhelming, as she is used to mostly one on one, calm activities at home? Or maybe she was just getting over tired... (?) just curious...

  3. To answer your question, I think Josie's tears were the result of a little stranger anxiety (she kept looking back at her mama) and being worn out/overstimulated. I don't think PT hurts but I think some of the positions may be awkward or uncomfortable. And Josie likes to take awhile to stare people down and decide if she likes 'em before they handle her but there was no time for that on our strict schedule so I think she cried a little out of fear, discomfort, and protest!

  4. So sad we don't have a Ds clinic in Washington state. I love, love, the pioneer woman, and have both books and just love her website packed with info. We are trying to wean Tommy from his g-tube and he is only getting thin liquids but it's getting him to want more volume of juice or milk during the day that is our current issue. Good luck! Just love reading your blog!!

  5. I LOVE our DS clinic! Makes my life SO much easier - they schedule it all in one day for me. So my 2 hour drive is just in one day instead of multiple trips to doctors all over the place :) I just found your blog today through Courtney & have been loving Josie - what a doll & her parade wave is fantastic!