Joubert Conference - Part 2

Saturday – day four.  More practical workshops in the morning. Our first choice, Speech Apraxia, was cancelled because the leader never showed up, so we had to go to Dealing with the Stress of a Special Needs Child.  The gist of it was slow down, take time for yourself, exercise, breathe.  Well duh.  She did give a disclaimer that none of this is easy, but geesh.  I guess it was good to hear though.  The reality is that a kid with special needs does bring more or at least different stress to your life and it’s good to hear a reminder now and then to keep things in check.  Keep the priorties the priorities.  While neither Brent or I are good about taking time for ourselves or exercising, I feel like we’re doing a pretty good job keeping the first things first for our familes.  But needless to say, it’s a challenge.

We then went to another small group for parents with JS kids under six.  There was some great conversation and idea sharing.  It was neat to hear that several other families and kids have joys and struggles similar to ours and Connor’s.  Our other small group that day was around sensory processing.  The sharing wasn’t as rich as it could have been, but we did learn that other kids have sensory issues specifically around clapping and the song “Happy Birthday”.  No new ideas on how to deal with those issues, but it’s nice to know we aren’t alone.

And I think that was really the greatest benefit of the conference.  Even if I find it hard to face the realities of Connor’s syndrome and what may be down the road for us, I have now met others who are on a similar journey.  And when I want to, I know I can reach out to those we met or those who are in the Facebook group and they will be there with an idea for a current issue or just a kind, encouraging word.

Saturday night brought the much anticipated banquet and dance.  Clara had packed her fancy dancing dress

Clara let me take a picture with her date
for the dance.

and was really looking forward to participating the evening.  My sister also got to come for the festivities.  We had a lovely dinner, heard from the new President of the foundation, bid on a few items at the silent auction and then the dance began!  Clara started dancing right at the table and Connor started bopping along with her.  He squealed and bounced and laughed at all her crazy moves.  If you’re on Facebook, check out the super cute video on my page.  That was the third time I cried at the conference – simply out of love for my adorable children and the very special way they connect.  And then we all hit the dance floor.  It was a cool experience – dancing around with all the other parents and kids – and a perfect way to end the conference.

So overall, the conference was good.  While I didn’t learn as much new information or as many tips and tricks as I had hoped, I’m going to chalk that up to the amount we’ve read about JS in the last 15 months, the excellent care we receive at CHOP and our amazing therapists.  The next conference is in Chicago in July 2015.   I likely won’t be able to go because of the ELCA Youth Gathering, but Brent and Connor may go.  We are so thankful for the JSRD Foundation that values not only supporting and sharing the research that is being done around Joubert Syndrome, but also values gathering people affected by JS for learning and support.

Connor has always loved his bottle and now he can
hold it himself!

One quick non-conference fun thing to share with you – over the last few weeks Connor has finally started to hold his own bottle!  Such a big step as this is really the first thing he has held or wrapped his hands around.  We’re hoping for a rattle or toy next!

I also found out that while one piece of Connor's equipment is on back order, the other two are quite possibly just sitting in a room somewhere and the person at the medical supplier who can tell me where they are and when we can have them seems to not like to call people back  Pray for my patience and good will towards other humans!!