Tuesday, December 31, 2013

Happy New Year!!!

We are such the party animals.  My sister invited the older three to sleep over at her house And what do we do? Take Jason to grandma and grandpas house.

Jason does need time out of the house. That's my excuse and I'm sticking to it.

However, time away from home gets old for the boy too. So we told him to give kisses. Grandma got a good kiss, but tonight Jason wasn't giving one to grandpa. He covered his mouth every time grandpa went for a kiss. Grandpa is always ready to work hard with Jason.

Then we gave Jason his meds and watched a show. Now it's 10:30 and Brett's out as well. I'm going to take advantage of the quiet and go to sleep too. Good night world. See you in 2014!

Weighted blanket

Jason was frustrated so he got under the blankets. I put the #weightedblanket on him and a few minutes later he's up and happy. I don't think it will last and I can't imagine it will work all the time, but I'll take it.

This mornings goings on

My husbands alarm went off at 5:00am so he could go to the gym. I told him I was freezing and he discovered that the pilot light went out again.  He came back upstairs to find Jason was awake. I think he must've been cold too. So Brett got to stay home and be with the boy. After sharing a shower with dad, Jason finally fell back asleep. He actually slept until about 10:30am. I assure you this is a rarity.

He got up and joined me in my/his room. This is the sweet boy I have.  He climbs up and wants kisses.  He loves my hands...I must be getting wrinkly. 

Then he brought me the syrup. No this doesn't mean he wants pancakes. He doesn't like syrup on his pancakes. I think he's convinced it's soda. I love my boy!

About us!

This is us.  We are a family of six.  Brett and I were married in 1996, and Duncan was born in 1999.  We found out we were pregnant again with Tori eight months later and she was born in 2000.  We then used common sense and waited to have Samantha in 2003.  We decided our family wasn't finished and had Jason in 2007.  My youngest three have Sticklers Syndrome which is a genetic disorder.  My girls have been affected by having issues with their eyes, so I thought we had the problems figured out.  Jason was born with a soft cleft palate and a hearing loss.  He was always moving and shaking.  I called him my energizer devil.  He was the energizer bunny and Tasmanian devil all rolled into one.  I remember asking my sister how she handled her boys.  I wasn't sure if it was the fact that it had been so long since I had a baby boy, or that I was just older, but he was a hard one to deal with.  When he was eighteen months old he stopped sleeping.  He went from about 13-14 hours of sleep a day to 4 or 5.  It was a really tough time in our life.  As he withdrew into his own head I knew I was losing him.  For a few weeks my husband just thought it was the lack of sleep that was upsetting me.  We had services with early intervention due to his hearing loss so we had set up an evaluation with a speech therapist.  As she watch him the fear and terror was evident.  She knew something had happened and so did I.  The same day we had a well check for him, and she immediately started giving us referrals.  That's when we truly knew we were in for a long ride. 
 Jason was diagnosed with Autism at 2 1/2 years.  His severity has grown more and more apparent as he has gotten older.  He doesn't talk, or sign.  He has some pretty intense sensory issues, and has started having some aggression problems.  We have him on medicines that help but we are looking to start some more intensive therapy's as soon as Utah decides that they want to mandate insurance company's to pay for ABA therapy.  I have a feeling that this isn't going to happen anytime soon.  This is our story, and I hope it helps you.  Hang on for the roller coaster that is our lives!