A Summer Day!! Help!!

First thing in the morning, Sarah woke-up and stated she doesn't feel good.   I told her that we needed to go out to take care of her horse and she could ride.   She tells me she is not going.   We finally left an hour later and it was already 85 degrees.    I asked her to get the halter and get Ginger ready to ride.   She refused to go get the halter because she is scared of the mice.   I go get the halter and put Ginger on the hot walker.   I start cleaning the stall and Sarah miraculously gets Ginger ready to ride.  She takes her out and lunges her.   Sarah doesn't feel good and doesn't want to ride.   I gave Ginger a rinse and put her up.   I guess Sarah feels better because she is playing with the frogs.

I decide to stop by Target.   Sarah is being pretty good as we shop.   She already had some colored pencils and clay in the cart.   We are looking at the long lines and then Sarah decides to pitch a fit about a cloth belt she wants.   She continues to ask me over and over for the belt.   I continued to be firm and tell her No.   She says her belts hurt her and I still said No.  Ok pretty much everyone is staring at us and I just pray we can just get out of the store.   The cashier was super nice.   Sarah must of asked at least 10 more times about the belt before we left.   I'm sure everyone there had advice of how I should of handled the situation differently. 

Behavior people came over for an intake interview.   Sarah continued her enhanced behavior for 2 more hours.   She had the white clay we bought at Target all over the table and her hands.   Sarah was signing some of the paperwork and got white clay all over.   It was a long meeting and Sarah seemed to enjoy the attention.

I took Sarah out swimming.   She found a frog in the pool and started playing with it.   She was talking like a baby and yelling "Bean, Bean, Bean"   "Mommy it is my friend."  over and over.   She insisted on taking the frog in the house to be her pet.   We already told her last weekend, No frogs in the house.   She continued on and on about the frog.   She snuck it in and put it with Stuckie.   I started getting it out of the tank and she started whining about keeping the frog.   She finally put the frog outside and I watched it climb back in the pool.   She called Dad to see if the frog could live in the water.   I'm texting Fred, "No Stop Talking about it".   I tried calling him and he wouldn't answer.   I knew Sarah was going to freak out about the frog dying in the pool.   This frog episode went on for about two hours.   Sarah continued to talk about the frog like a baby until she went to sleep.

This is one of our first days of summer.   I need the shirt that says, "Countdown to School Starting"   No joke!!   She goes to camp next week and I'm praying she will last a few days before getting sent home.   I'm in a parenting lull lately.   I need to continue to rely on God and slay those dragons tomorrow.

UC Davis Mind Institute

We have tried to pursue all medical treatment for Sarah.   Sarah's pediatrician asked me if we had been to the Mind Institute.   I told her we have not been there.  She said, "Wouldn't you want to go to the best place?"   I checked with our psychiatrist to see if it was something we should pursue and he agreed.   I made the appointment.

Traveling to Sacramento was difficult and Sarah had a meltdown (outburst) an hour before we arrived.   I found a Chevy's to eat at and that seemed to make her happy.   My cousin was supposed to meet us, but she ended up being sick.   Sarah had it in her brain that we were going to a big city, so we should go shopping.   We drove around a bit and tried to find a store.  We stopped and ran into what we thought was an art store, nope a print shop.  We were unsuccessful and Sarah was disappointed even though I never agreed to go shopping.   We finally headed over to the research hospital.

We arrived and checked-in and immediately Sarah was playing with the babyish toys.   I told her not to go outside and wait for her volunteer.   She ignored me and went outside.   I went to get her and a volunteer said she would play with her outside.   Sarah knows she can get away with more because she knows I will not want her too cause a scene.   She is definitely awesome at causing a scene to get her way. 

A social worker called me back and we started to discuss Sarah.   She asked why we were there and I stated that we were referred.   She asked why we were referred.   I kind of thought she should look at the referral.   We were at a research hospital and I personally want some research for Sarah.   She stated that Sarah already has a diagnosis for autism (ASD) and that is what they would do for her.   So, let me get this straight.... I drove all the way up here for you to tell me you can't do anything for Sarah.   I pursued the issue and asked if they had any studies, new medical treatment, or innovative treatment.   She said, "No it looks like you have done everything for Sarah."   We are supposedly, as per the pediatrician, at the best research hospital and they have nothing for Sarah.  She felt bad and said Sarah could have a genetic blood test.   I let her know Sarah had already had that test done.   She said we could be referred to a psychiatrist for a med check.   I agreed, but there is zero change of us driving up there for a med check.   Sarah already goes to an excellent psychiatrist. 

Yep, I cried most of the way home.   Sarah terrorized me in the car by beeping super loud in my hear, randomly clapping in the ear, and popping a bag in my ear.  All of these behaviors continued for three hours.

I guess we just keep doing what we are doing.   I'm pretty sure that I will be hesitant to go to anymore research hospitals or at least ask more questions before we go there.

Here is Sarah with a sweet foster puppy we babysat for the weekend.  

End of School Year

I'm definitely one of those parents that dread the end-of-the school year.   Any sort of change is hard for my kiddo.   Sarah needs structure and summers are just hard.   Her focus is what is next and it can literally drive you up the wall.  I need the calendar of Back to School Countdown.   I need the T-Shirt that says, "Hey take my kid back"!!

I wished schools would consider special needs kids and include them in the activities at the end-of-the-year.   I knew what Sarah was missing because I have three older sons.   I'm not sure that Sarah knew what she was missing.   I asked if she could go to the Wild Waters Trip and it was determined that she could not go.  She has a one-on-one aide and they still said No.    I think I just dropped the ball after that and just prayed for the last day of school.  I literally just wanted the school year to end.  I wished I had the energy to make a change for these kids.  Maybe someday!!

Thank-you to all those wonderful people that do make a difference.   Here is one of them with Sarah.   Thank-you Sheila for the unconditional love you have for kids!!!!