Sunday, February 6, 2011

Feb 6th, 2011: Annelies's World of Opportunity Just Got a Little Bigger

From the first day Annelies came into our lives, I looked for opportunity for her (once I got past the self-pity part).  I read hopeful stories in blogs and on other websites from all over the world about what people with Ds can do and have achieved.  Via YouTube, I 'met' a very cool lady in New Zealand who lives on her own and has her drivers licence (when I saw that video I initially thought...wait, you are driving on the wrong side of the road...).  I 'met' kids who go to school and have typical friends.  On Face book I 'met' these 2 beautiful girls who were hanging out at Starbucks in Germany via a fabulous photographer (Conny Wenk-Google her, her pictures are a true treat) who makes it her life work to photograph kiddos with Ds.  I met in true life a beautiful 10 year old who attends public school in Colorado, and a just-21 year old who celebrated his 21st B day in style, in Las Vegas, where his Dad bought him his first shot.  I also met 100 beautiful children in Holland, in a book my Dad sent me, taken by a photographer who has nothing really to do with Ds, but was just fascinated by the beauty of 'our kids' and felt teh need to publicize this.  These images and real-life meetings gave me such hope for Annelies's future, and eased the 'freaked-out-ness' that I felt about the diagnosis. 
What also helped tremendously were the words of our Pediatrician who told us:  "Do not let this diagnosis lower your expectations for this baby.  She will talk.  She will go to school.  She will lead a full, productive, independent life..."  At Annelies's first physical she did not even want to write "T-21/Ds" on her chart. 
So of course there is hope, and there is the question of:  What are we going to do to bridge the gap, or as they are called in therapy, 'deficits' (also such a lovely word, but I am not worried that much about words.)  How are we going to get this beautiful baby from here to a relatively 'normal' life without being too drastic about it?  When I bottle fed Annelies those first months, it occurred to me that the bottle-nipple-holes were packaged and sold by age.  0-3 month nipples had small holes, 3-6 the holes became bigger, etc etc.  Because Annelies is a child of 'least resistance', I gave up nursing her after she discovered how easy bottle feeding is when they started pounding those bottles into her at the NICU (They were just doing this because low tone can partially help cause feeding issues with many kiddos who have Ds.  And I was still in the self pity phase of the whole thing so I went along with what they thought would be best.  I knew nothing about Ds, and was more worried about other possible health issues that were presented to me she might have because of the Ds.  I LOVED the nurses at the NICU and will forever be grateful to them, for giving us our start.  At any rate, here Annelies was drinking happily from her bottles.  I used lowest possible flow nipples because if she was not going to gain strength from sucking on a human nipple, she sure as hell was going to gain as much strength as possible from the fake ones.  And I never moved from the low flow.  The nipple I threw out just a few months ago was a lowest-possible flow nipple.  When I pumped for Annelies, I found I had to set my (hospital grade) pump setting higher and higher.  So I wondered about the 'wisdom' of the hierarchy (shall we say) of the fake nipple holes.  And I applied my logic (I may not have much, but I DO have logic and common sense, and they DO help get you somewhere sometimes!) and made that decision. 
Anyway, about 6 months ago I was told about Sara Rosenfeld-Johnson.  If you have a child or loved one with Ds, you have to look at this article: 
The Oral-Motor Myths of Down Syndrome

By Sara Rosenfeld-Johnson, M.S., CCC-SLP
Published in ADVANCE Magazine August 4, 1997
You can get to it via this link, scroll down to the bottom. 
Annelies had an evaluation today, and it was so helpful.  I will not describe all that we talked about, because my head is still spinning.  But in a nut shell, we have a set of tools and steps we are going to take that will help Annelies strengthen the areas in her mouth that wll help her eat better and eventually talk as clearly as she is going to be capable of.  SRJ gave a lecture last night for parents, and out of all the things she said that were so good, one thing that resonated with me.  That was the part about how such a large percentage of communication has to do with visual perception of a person.  What do people think about when they see a person with Ds?  Slack jaw, tongue hanging out (partially).  What do people think with they are presented with a person who looks like that?  Right.  Go figure.  Slam that door (to opportunity-jobs, schools, etc) right shut!  SRJ found methods to therapy that can be done at home to decrease this, and send out kids on their way to Oral Motor 'control' (for lack of better words).  Annelies and I had a 2 hour meeting with SRJ today.  I told her my thoughts on nipples and she told me I am "the perfect mom".  LOL.  She made me feel good, even though I am so far from being that (seriously, she was just being funny).  But she DID tell me that becausee if what I did, Annelies's tongue thrust is so mild, and she has a wonderful 'basis' to work from!  As I drove home, I was nearly in tears of hope and happiness.  I saw more doors open for my child, and I am so excited for her!