Sometimes it pays off...

One thing that special needs parents don't think about or realize initially is the amount of time they will spend on the phone, sending emails, going to appointments, making appointments and arguing with providers/insurance about countless things. Doctors suggest "get a case worker!"  It's a joke. A case worker is another call I need to answer, another person less informed than me that I need to inform and commonly, someone I'm giving advice to for things they weren't aware of.  It's not their fault.  Dealing with special needs is complicated. And confusing.  It's trial and error.  You get a name, you make a call, you wait for a call back, then they don't know the answer, and you wait.  Over, and over, and over.

We've dealt with some pretty annoying (damn right frustrating) things in the past when it comes to advocating for Mason's needs.  I don't want to share specifics about one of our most recent situations, because we live in a small community, but sometimes advocating for your child makes you a down. right. PAIN. IN. THE. ASS. to people that aren't equipped to deal with the amount of negotiating and influence about to come their way from this passionate mom. And sometimes my well intentions screw up something for someone else and its unintentional and I'm sorry for that.  But I won't stop doing it...because I'm making sure that Mason gets what he needs.

We just started watching the show Speechless.  I encourage everyone to check it out.  Its a glimpse into what its like to have to think about every detail of every life activity for one of your children.  I'm not saying that most moms don't do this anyway, but special needs has you talking about feeding times, BM's, weird behaviors and adapting equipment more than I care to share.  It's just different.  And the show shows a mom that takes this to the extreme but I can completely relate to her passion for advocating for the BEST for her child. 

So yes, there are frustrations.  But then there are AWESOME days like today where all of your calls, follow-up, questions, dealing with insurance, getting denied, getting new funding and then dealing with the distributor that gives you 12 hrs notice about delivery, (ahh!) to get you what you need. Today it was a new car seat for Mason.

First thing I noticed - its massive.  Much bigger than we anticipated.  Oh well.  He'll sit in it until he's 18.
Second thought - I'm literally going to look like I'm driving down the road with a ginormous blue gummy bear sitting in my back seat.

But fuck it - its awesome and I'm going to drive it around with pride.

Besides that, Mason has been spending more time with his Ipad at school and learning its tricks.  Thank goodness for good teachers that can find dedicated time to spend with him to work on it. Chris and I are so far behind on using it at home, but we're banking on getting some time with UWSP for 1hr/week therapy starting this winter so we can dedicate time to learn it and maximize it for Mason.

I figured I'd share two quick videos showing you all the app and do some shout-outs all at once! (randomly picked folks, Mason doesn't play favorites.)

Next post: All my thoughts and feedback about our "no kids getaway" to Boston recently!!