MSS Conference

Every couple of years, there is a conference held in the Netherlands for MSS families.  They have researchers and doctors attend along with workshops and the ability to connect with other MSS families.  The last one was held last summer, which we were unable to attend.  It would have been really nice to meet many of the MSS families face-to-face.  However, for those of us who couldn't attend, they released a couple of videos from the conference, and less than two minutes in, I grabbed a notebook to take notes (once a scholar, always a scholar, right?).

Here are my notes from the conference:

* Joas' (7 yrs) mom was interviewed and she talked about living one day at a time, not thinking ahead, until she was faced with some of the older kids (18 and up) and she realized that it could be like this for another ten years or more.
     --I remember being very much like that in the beginning.  One day at a time.  One obstacle, then another, always with the thought of less than three years in the back of my head.  Then, when I started connecting with other MSS families, I too, saw how long some of these children live (still living).  The oldest is Lindsay, who is 34 years old.  With that realization comes the fact that in a very real sense, we could be caring for Kai as an adult, and we need to think more long term.

*  There are 33 families around the world, and three of them are Dutch.  --It didn't say how many are American; I can think of at least five right off the top of my head, including Kai and Lindsay.

*   A link between MSS and autism; MSS children are very autistic-like in nature.  A small number do have  autism.  Parents and children to seek better ways to communicate; and most are physical contact seeking, such as putting their arm around their parent's neck.
     --Kai doesn't have that skill, but he loves when I put my face to his head.  He craves physical contact and usually calms fairly quickly when held

* Most children do not speak but are very social and interested in their surroundings.  You need to talk to them and act out what you mean

* They are happy with small things

*  MSS is mostly bones--abnormal bone structure, which effects everything; breathing (bones around the windpipe tend to be very soft), curved spine to one side (I didn't realize that was an MSS trait--now I know why Jeremy is developing his "hump" despite all our precautions) --even those that walk often develop the curvature, and hip problems. 

It was really neat to see the videos and to hear what other families had to say.  I loved watching the kids play around and interact.  It both gave me hope and broke my heart because Kai is no where near the level of those kids.  There are varying degrees in MSS, and unfortunately, Kai is on the more severe end.  I had known this, but watching some of the other kids really brought home the severity.  Hopefully, as Kai grows, he will be able to achieve some of the things the other kids can do.  He is already beating the odds by being here today.