Let the Rookie Win.

The other day my neighbor, Karen, told me that she thought Reagan was a perfectly lovely child :)  That Reagan usually appears completely normal.

I think many people view Reagan this way.  And that's not a bad thing.

Reagan has moments of Zen.  Because of her SPD, and the desire to touch, and be touched; Reagan is very cuddly/lovey.

But when she has an emotional outburst....  Life gets difficult.

The day before Thanksgiving, I met my Heather, Jeff, and my nephews at Boondocks.  I bought wristbands for the kids to play in the play area. 

Reagan explored for 15 minutes, and then started trying to leave the enclosure to check out the video games.  It was an uphill battle from there.

Before I even suggested going there, I KNEW it wouldn't be a great place to take Reagan.  But for me, the hard part is depriving Elsa and Cohen of fun activities, because they'll be too hard for Reagan.

So, we went.  And it was no surprise to me that Reagan had a meltdown.

She ran away from me.

When I managed to catch her, she bit my hand.

I picked her up, and she bit my face.

I fire-man carried my screaming ball of fury to the glass doors, and she grabbed a door handle, nearly knocked me to the ground; and broke free.

I caught her again, and we made it to the car.

You could hear her crying a mile away.

Once she got her sippy cup, filled with milk, she calmed down.  This is very common situation.

A few days later, I took Reagan and Elsa to see Frozen. Reagan did pretty well during the movie.

At the end of the movie she ran down the stairs, and climbed up on the stage, in front of the screen.  She liked seeing her shadow on the screen.

I had to climb up after her, and bring her down.

The entire walk back to the car, Reagan kept cocking her arm back, and punching me.

The difficult moments are wearing on me.

Reagan has only been violent with Nick and me.  Thank goodness!

The Psychologist said that it's because when Reagan is at school, and  in public she really is trying to "hold it together".  And that when she gets home, she can release everything that is pent-up inside of her.

I understand this 100%, but it doesn't make dealing with it any easier.

Don't get me wrong, things aren't like that every waking minute.  Reagan loves to be held.  We calmly read books together a lot.
We had a near perfect restaurant experience earlier this week when we took the kids to Chili's.  Reagan is crazy about their blue slushee drinks, and the corn on the cob.  When we go to places that are "Reagan friendly", life is blissful.

Since the psychologist mentioned SPD, at Reagan's evaluation; I've been reading a lot about it.

I found myself constantly saying: "yes", "oh my, yes!, that is Reagan to a "T""; when I was reading about the symptoms, and about other parent's stories concerning their own child's experience with SPD.

But all of the medical articles, and parenting resources made it abundantly clear that SPD was not a medically recognized stand-alone diagnosis.  It was a symptom of a larger disorder.  Most commonly: ADHD, or Autism Spectrum Disorder.

Even knowing that, I still wasn't prepared to hear the diagnosis from Dr. Teel, when Nick and I met with her on Dec. 5th.

We met with Dr. Teel, Reagan's Psychologist, for an hour, and she went over her report on Reagan.  She is so thorough.

She said that if Asperger's still existed in the Medical world, she could have easily given Reagan that diagnosis.  But it's gone.

So, she diagnosed Reagan with Autism Spectrum Disorder.

You could have knocked me over with a feather.  When Nick and I got to the car, I asked him if he was shocked, because I certainly was.  I had been under the impression that an Autism diagnosis was "off the table".

Nick explained to me that Reagan is NOT Autistic.  That instead, her symptoms fall under the Autism Spectrum Disorder umbrella.

So, Sensor Processing Disorder is her main "demon", but for medical purposes she is classified as Autism Spectrum Disorder.

When I went to bed, the day we received Reagan's diagnosis; I cried.  I ache for my baby girl.  I feel so badly that she has this major hurdle in her life.
I just want her to be able to have all of the same experiences that her friends do.
And I don't know why that can't possibly happen?  I will certainly do everything in my power to help her.

The psychologist gave us a lot of information/resources.  And she gave me hope.  She said that she sees no reason why Reagan wouldn't be able to go to college.  That Reagan is free from learning disabilities.

I've already been putting a game plan together.

Reagan started Occupational Therapy last week at one of Primary Children's Medical Center's rehab offices, to help improve her fine motor skills.

I put Reagan's name on the waiting list for the lottery for the 2014-2015 school year at Spectrum Academy (a school for children with Autism Spectrum Disorder).  And I am going to hope for a miracle, that I can get her in to that school ASAP!  I'd love it if Reagan could finish up her Kindergarten year there.

I've written up my own 504/IEP for Reagan.  And I started the ball rolling to get the public school on board with this as well, in case Reagan doesn't get in to Spectrum Academy.  Go figure?!  This is where I am getting the most push-back.
Not from Reagan's teacher, of course.
Her Kindergarten teacher is divine.
But I feel like I already have a battle on my hands, with the administration.
This is one time when my mean streak & confrontationalism will be good things.  Ha Ha.

I've been speaking with the "resources" that I have in my neighborhood.  Reagan's teacher at church is a counselor at a nearby elementary school, and she has a daughter with Asperger's.
The first person I called, after Nick and I spoke to Dr. Teel, was another neighbor.  Also a school teacher, and also a parent to a child with Autism.  She has a wealth of knowledge, and has given me so much good advice.
She also told me, that their family motto is: "Let the Rookie Win!".  In other words, put the child with special needs first; in everything.  I am totally going to adopt that saying.

I have had an incredibly difficult time coming to terms with the fact that Reagan's problems aren't behaviorally based.  My parenting style has always been tough-love.
I had thought that I'd just need to learn a new disciplinary style, to use on Reagan.
But that's not the answer.
Reagan doesn't posses the ability to see things from other people's perspective.
She doesn't act the way she does, because she wants to be naughty.  She just doesn't have the same controls that most of us do.
I am going to have to learn a very compassionate form of parenting, when it comes to Reagan.  I think I can do it?  I hope I can do it.  It's what she needs.

I do not intend to make Reagan's diagnosis public knowledge.  I think most people will automatically think that Reagan is Autistic.  She is not.  And I don't want her to be labeled as such.
I wish I could just have everyone I know read my blog, so that they could understand that Reagan's main problem is SPD.

But since I cannot....  Sigh.

I'll just ask all of my blog readers to give my precious, eldest child a hug- when they see her.  She loves hugs.
And be understanding if you ever see this frazzled Mom trying to parent her (occasionally) unruly blessing of a daughter.