Down Syndrome Clinic

It was time for Justin's annual appointment with the Down Syndrome Clinic.  I am always a little hesitant about this appointment.  It's one of those times when you have to weigh the positive against the negative to make sure that it's worth making going.  I pour my heart into Justin's appointments and make sure that I can report accurately what is happening with Justin so that I can get an accurate assessment.  I know they only get him for a few short minutes so I need to fill in what has happened since the last visit.  For the first time I left the appointment very encouraged and affirmed.  I know that's probably a little silly, but this is our everything appointment, the appointment where we go over every aspect of Justin's care and then I get a "report card" if you will, regarding their opinion of Justin's progress.  At this point it's all about our progress and choices since Randy and I make the decisions about his care.  I don't know why I get myself all in a flurry about this appointment but I do, and I know Randy just shakes his head at me when I gather all of my notes and therapy assessments but I want to get the most I can out of this appointment.  For the first time I felt like this was an A+ visit.  That keeps me going!

So, here's the highlights:  We always get a doctor, speech therapist and occupational therapist in the appointment.  The doctor is the point person and while we talk, the speech path does her visiting with Justin.  The doctor and I talked about the status of all Justin's issues: sleep, constipation, heart, thyroid, hearing, vision.  I think those are the biggies.  I am really getting the lingo down and I think she believes me a little more when I relate Justin's current status.  She loves that Justin wears his CPAP mask so well and that had earned me lots of points.  And we talked a lot about therapy and insurance because around the beginning of June we had a huge insurance issue.  I spent lots of hours on the phone working it out and so far we have it worked out.  It put this appointment in jeopardy so I spent a lot of time talking with their nurse at the clinic to get it resolved.  I think my persistence earned me some more points.  (Points are good by the way!  :)  I felt more like we are on the same side for the first time.  One of the key issues has been our decision to homeschool and I think she heard me at the core level.  It's not an easy decision and we know we are sacrificing some things to gain others, but I think she understood that we recognize that and have made our choice after weighing everything.  She finally seemed to be okay with our choice.  We'll see if that continues...

Both the speech therapist and OT were impressed with Justin's progress.  They "aged" Justin at a solid 36 months in speech with skills up to 42 months.  I haven't gotten the speech therapist's full report yet so I am not sure all what she says.  The OT said he had solid skills at 42 months with a smattering up to 44 months.  The OT was new and I haven't worked with her yet so I will be curious what her report says too.  They both were very positive and pleased with his skills.  I haven't directly compared the reports from last year to this year, but in my free time :) I will get to it! 

There was one line in the report that made me smile: Justin visited the clinic with his mother who is an excellent historian.  Okay, that one line made all my detailing and reporting and cataloging worth it.  Big smile!