Waiting for directions

The last few days have been tough.  Cade seems to have been dealing with a setback...we've been trying to figure out what has happened but it's a little like doing a jigsaw puzzle without knowing what the end result is supposed to look like.  He seems to be dragging a bit, so we're pretty sure he's had a virus or something going on.  And when any illness or threat to his immune system hits his body we have figured out that it causes his sensory deficits and his autistic behaviors to go crazy.  Especially his OCD.  He is back to not being able to stand a page being wrinkled, he cannot stand for Kai to even touch him a little (his tactile defensiveness is really bad), and his meltdowns have been bad.  We just cannot seem to make him happy,

These times are hard...it's hard to watch him regress after all of the progress he's made.  But it's comforting to remember that hopefully this is only temporary.  From the research I've done and in talking to other moms all have told me that the same thing happens to their sensory kiddo.  I heard from a dear friend in the DC area just today discussing this very same thing, and she'll never know how comforting it was to have a kindred spirit going through it, too! (thanks, Melanie!)

But this time we are a little more prepared....we've been to STAR and know just what things seem to set Cade off during these times.  We have truly learned how to play with him, and are working hard to give him the sensory input he needs to at least help him regulate a little.  Co-regulation is what they call it...we are working to basically regulate his sensory system for him because he cannot regulate it himself right now.  Again, something I never expected to be doing during this whole "parenthood ride" but necessary none the less!

We are also much more prepared at home.  Through some generous help from dear friends of my parents we have been able to set up our own Sensory Playroom at our house.  And it is awesome!!  We began working on it before we left - moving our furniture to another room in the house and clearing everything out.  But after going to the STAR Center we found out what we really needed to include that would specifically meet Cade's needs.  His strongest sensory deficit seems to be his vestibular and proprioceptive systems - his need to climb and crash is tremendous!  Enter "Lycra" ...

Lycra is basically a material made from polyester and spandex and stretches...think bathing suits.  We were introduced to it many months ago from Kelly, Cade's first OT.  There they had a swing made from Lycra which allowed him to curl up inside and swing.  Then this summer Heather brought over a large piece of Lycra fabric, and we really saw how powerful it was for Cade.  It was very calming and he loved to wrap himself completely up inside of it.

The STAR Center had the "Rainbow Room" - which if you were keeping up with us then you heard about!  That room was extremely powerful for Cade...he could climb the fabric and hang out there...very calming for him.  So when we got home and were able to recreate a version of this in our new therapy room we were thrilled!


The Lycra literally hangs from our ceiling...I'm quite sure this old house never thought it would be used for something like this!

We installed the ropes to give Cade something to reach for.



A testament to his hard time right now...he looks extremely miserable, but he really does love it, I promise!



There is no question how Kai feels about it...he LOVES it!



We also installed a Lycra swing.  I cannot tell you how wonderful it has been...Cade get inside and swings and you wouldn't believe the communication we get from him while he is swinging!  It is so amazing how connected his communication and connections are to what his body is feeling.  It is very relaxing and he has fallen asleep inside several times.  And Kai loves it, too...and except for the single time that Eric was swinging him just a little too long and he got motion sickness, all has been well!

So I am still encouraged even though Cade is struggling right now.  Because I know knowing is more than half the battle when it comes to Cade.  And the knowledge we gained from this summer is priceless.  So I will get myself up and dust myself off once again, knowing that God will swing Cade once again to the other side.  And I will wait yet again to see what miracles will happen...because it seems that each time the road becomes a bit bumpy that means God is about to take us on another wild ride.  So, as the song "Here We Come Again" by Dolly Parton floods my brain, I buckle my seat belt and wait for directions fron above.  I'll keep you posted as to where the ride takes us this time...