appreciating small victories and finding our common denominator

Hunter's Special Olympics swim meet was last Saturday.  We had talked about it for a few days, and he said he wanted to try.  We told him he didn't have to participate- but we were going to watch his friends.  If you have been to a swim meet before, you know the scenario...loud reverberation, children and parents screaming and whistling...not the ideal location for a child on the spectrum.  Hunter warmed up in the pool and looked great- big smile on his face, using ice cream scoops all the way down the lanes...but everything changed as the anxiety picked up when the official called everyone out of the pool.  For a man working with special needs kids- I can't say the tone or volume of his voice assisted the environment.  As we waited on our assigned chair in order of heats, Hunter's 25 free was first.  He started crying and the little boy next to him hit him- no blame here; Hunter would have done the same if someone started crying.  We made it to the blocks and he said he wanted to jump in.  He got on the blocks, covered his ears, and when the whistle blew, everyone jumped except for Hunter.  He then broke down in tears because "everyone left me! I'm not going to win!!"  We sat on the side after encouraging him to get in and swim with no avail.  The noise added to his frustration, so we went to the lobby to sit it out, read some books, and have a snack.

I waited until his next event, and he said, on his own, that he wanted to try again.  Back to the heat corral...and once we reached the blocks, same situation.  Official blew the whistle, everyone went, and Hunter was left standing and crying.

We sat on the bleachers this time as he cried in my lap, and I told him we didn't have to do it again.  Well, this child is definitely our own- "I want to try again!!!!!"  Tell him he doesn't have to or can't do it, and he is back at it.

Attempt number three: 25 Backstroke.  This time, he jumped in to start in the water.  After the whistle blew, his eyes scrunched up tight...but he left the wall...

and he kept swimming.

He paddled his little arms and kicked those long legs, in between his face going from a smile to a cry.  He wasn't giving up.

He pushed himself all the way to that wall...and won his heat.

He did it.

best big sister ever.  she does these things all on her own

running down the hills after the race

So incredibly proud of this boy for conquering his fears...the noise, the commotion, the many volunteers who were talking to him..his anxiety was at an all time high but he talked that anxiety right back down.

Had to celebrate with our fave restaurant and ice cream!

 So besides a natatorium, the second worst place in the world (actually, I think this one takes the cake) is the CIRCUS.  Peter was given tickets through work, so we decided to give it a try Sunday morning.  If he couldn't handle it, Peter would stay with the other two while Hunter and I walked the building.

 All was going OK until we got closer to our seats...walking through the halls, in the stream of many children and adults, contributed to his anxiety, but as we neared the walkway, his "I don't WANT to go to the circus!" became louder and his slight taps on my arm became full-fledged swings.  As my stinging arms blocked his hitting, a police officer gave me the stare down.  I don't think it was directed at Hunter- I think he was trying to figure out if I had kidnapped this child who was beating me up.  I kneeled down next to him and took his face in my hands- and I told him he didn't have to go in, but I was going to watch the show from the curtain.  As I approached the entrance, he ran up next to me.  I picked him up and held him tight- and his interest pricked up as the music started and the animals arrived. We ended up sitting at the top set of chairs, but Hunter was screaming that he wanted Daddy.  As I covered his ears, I told him that if we walked all the way to the bottom (we had great seats), we wouldn't be able to get up.  He stood up and off we went.  He sat in Peter's lap and between screams we saw smiles, and soon he was sitting in his own seat right next to me, and the hands were in his lap instead of over his ears.

Again, he did it.  He beat the circus!  And the fast moving commotion, the bright lights, the loud, amplified sound system..I can't think of a worse nightmare for a child on the spectrum with a sensory processing disorder.  But this little boy was overheard saying during the first act, "This is the BEST circus ever!!"

yikes- tigers all around a trainer

mommies and daddies love the circus too

With these two events, I realized that this child isn't suffering as much from a Sensory Processing Disorder- he is dealing with the Anxiety monster.

I know all too well the effects that anxiety can play on an individual- and us adults have learned to cope.  We find vices to help or "talk down" the anxiety.  I know if I have a big meeting or an important doctor's appointment, I need to try to go to bed early so I can get up and work out prior to the event.  Some people chew gum.  Others find distractions like scrolling through FB to distract.

As a child, how do you learn to cope with anxiety?  How can this little boy handle so much, and avoid the constant flight or fight scenario?

We are going to meet with a psychologist next week who has a little history with Hunter- she evaluated him about 4 months after PANDAS hit.  At that time, she described him as quirky, but not on the Autism spectrum.  I realize now that she couldn't diagnosis him because he wasn't fully immersed in Autism yet- PANDAS was slowly taking this child from us. She provides CBT, or cognitive behavioral training for children and specializes in children on the spectrum.  We are praying for a positive experience and a good match, as well as a blessing from Dr. G as far as adding this treatment regimine during our IVIG evaluation period.

We met with the special ed teachers today to assist with kindergarten transition in an attempt to lesson the anxiety about a new school.  Hunter brought a book in called "Get in a Fight" from the Berenstein Bears.  As we waited, he asked me to read this book (it's a new one from Grandma Sue)- and here was the moral of the story at the end:

And the day before, a text from our friends who have moved, but still are finding the arches everywhere...

I  need to start believing these teachers who tell me that kindergarten is going to be OK.  He is going to make it.  He is going to handle a regular ed classroom for eight hours per day- woah.  That sounds intimidating.

But he is our son.  He comes from a family of fighters, on both sides.

He can talk down this anxiety and finally, finally enjoy a milestone of his childhood.