Sunday, September 30, 2012

Peter


 This year has been kind of a crazy year.  In March we found out Peter has Autism and that means that we are super blessed and do and view things so differently.  Let me start from the beginning.

Peter started out his life in the NICU and has had a few surgeries, sleep studies, oxygen tanks, trials etc.  He has always been so amazing and strong and even before he was born I received a priesthood blessing the night before he was born.  What I remember from the blessing was that I would be safe in my delivery and that I needed to prepare for a strong child that was going to be born into our family.  He would be amazing and have lots of purpose.  That he would be important and have a mission for this life.  I can't ever stop thinking about the feelings of greatness I felt about Peter.  I needed to be a good mom to help support this Child of our Heavenly Father that was going to be mine.

He was born a large baby with a large personality.  He is super sweet and kind and smiles and jokes. Peter is sneaky and loving.  He wants hugs and kisses, he wants the world to be happy.

Lucy walked late, so we figured Peter would follow after her example of walking at 15 months I think?  That came and went and he was still not walking, besides the feeding therapy that he was getting, he started getting Occupational Therapy to help teach him to crawl and move and do something other than just sit and watch.  At his 18 month appointment the doctor suggested we get him evaluated at the developmental dept to just make sure things were where they should be.

After a HORRIBLE evaluation (I have strong feelings about the doctors and how their practices weren't where they should be)  they suggested to me that he should be evaluated for Autism.  That was such a HUGE thing to hear, too much for me to hear after that horrible evaluation, I sat in my car and cried before I could drive home.  I called Evan, I cried some more, then wiped my tears, and drove home 40 minutes, crying all the way home.

It was a lot to take in, and I didn't understand what they were telling me and I didn't like how we were treated and thought they were incompetent and couldn't understand why they would suggest he was autistic.  From what I knew about autism didn't match Peter.

So because Peter was so young, the JFK Partners(behind Children's Hospital) was able to get him right in for another evaluation.  It was a night and day difference of an evaluation, I went in one day on my own to answer 2 hours worth of questions, Peter went in the 2nd time and it was a great eval.  Our third visit in is where Lucy, Peter, Evan and I went in and talked to Dr. Lindsey Washington.  She told us that he was Autistic.

I CRIED.  I mean, I really cried.  I cried so much that I couldn't talk.  I couldn't believe that the diagnosis was real.  I couldn't believe that Peter was autistic. I didn't know what that meant, what should I do, how was I going to tell people. How would I cope.  What did that mean for Peter. For his future. Would girls want to date and kiss him, would they want to hold his hand.  Would he get hired or into college.  Would people treat him differently or brush him to the side.  Would his symptoms get worse.  What was I going to do?

We left the office.  There was a staff meeting that had extra box lunches and they shared with us.  We went outside and there was an enormous Ball statue.  Peter loves balls-maybe obsesses on them(bubbles too), a symptom of autism-not just a toddler old boy thing.  I called my mom and cried while Lucy, Peter and Evan played around the ball.  I cried some more.  I hugged Peter lots.  We ate our sandwiches in the car and drove home.






What comes next, it almost seems like a blur.  We were sent tons of information and I didn't know how to make sense of any of it.  Since he was already getting some therapy, he started speech and social/developmental therapy too.  He loves his 3 therapists that come to our home each week.  I started telling people, but couldn't stop myself from crying each time.  I am better now.  I told someone last night and felt the emotion of crying, but nothing came out.

We started him in a 2 day preschool program that has encouraged him in ways I never knew could happen.  He is awesome.  He signs and says "thank you, more, all done, please, bye and hi".  He is so proud of himself when he does and it makes us all happy.  He dances, tries to sing in his own way, plays at the piano, loves, Mickey Mouse, Caillou, and most cartoons.  He needs lots of vestibular and proprioseptive input with his sensory diet to help him function throughout the day.  He wears a weighted vest that helps his body calm down. He loves to me scratched and massaged.  He is so cute when he says shoe.
Peter is one special kid.  He doesn't run and jump like other 2 year olds (he turned two in June-we took a trip to San Francisco).  He reads tons of books and likes to build things.  He can count to ten and gives the best hugs around!  He is full of emotion and has lots of compassion. He is smart and very logical about his actions. Peter is funny to watch when eating food that doesn't fit on his sensory palate, like rice or something not on his list of foods.  He carries his brown blanket with him everywhere and is starting to run faster than me.


We will retest Peter in a couple years to see where he is on the spectrum.  For now, we just live life one day, sometimes one hour at a time.  He loves and is blessed by his therapist and preschool teachers.  He plays so well with Lucy and TJ(the kid I babysit).


I joined a mom autism support group.  Sarah Easton taught me about the group.  I've been one time and loved it!  I cried half of the first time I went because I was so full of emotions.

I'm still learning what Peter needs, but for now, Evan and I can't get enough of him.  We love him and are so grateful he is in our family.  I'm sure I have tons more to add, that will come later-I've got to get better about blogging again for journaling sake.