Friday, October 9, 2015

You're So Laid Back......

   

I hear this all the time.  You're soooooo laid back, you're sooooo ok, you're sooooooo just happy.

Today I cried.   I cried because its October and I am already overwhelmed.  Unless you read this blog.....you would have no idea I cried.  You would most likely assume I am cheery , happy, laid back,  even keel Danielle because.....that is who I am on the outside....and for the most part the inside too.  Its those days though, the days it finally hits again and I lose it.....those days are tough and no one sees them other then my husband or one of the kids.

How are you so Nice/ok/loving/happy?....... First and foremost I'm a Christian.  A Christian who put all my faith and hopes in the hands of the Lord a long time ago.  Christians always say things are in "God's hands" or "you need to surrender" and it wasn't until Autism was in our life that I truly knew what that meant.

I don't know what will happen for Frankie in 10, 20, 30 years....I also don't know what will happen tomorrow.  He is the definition of erratic.  Everyday is a surprise in terms of behavior.  It was when that started happening about 3 years ago that I learned what it was like to truly surrender.  I will try my hardest, but tomorrow is always a NEW day and that can mean a positive attitude can go to a negative rather quickly.

It was through that....well THIS because I do this on a daily basis....that I learned to not sweat the small stuff.....or even the BIG stuff some days.  When your life revolves around the mental health of your child everything else become trivial.  My car makes crazy noises, who the F- cares, my sink is leaking, i don't care, I live in a 2 bedroom apartment with 5 people and i don't care because the money and time spent on him is more important.....because its ALL SMALL STUFF.

Today I cried because my son was approved for 1 hour of therapy 5x a week at a center IN new Hyde Park which is 30 minutes from my house.  I cried because I have put him first for the last 5 years.  Everyday after school I will have to drive my three kids a half hour each way for Frankie's therapy.  Today my daughter looked at me and said "You promised me you were going to sign me up for Dance, you didn't, the ballet outfit you bought me should fit by now".  What do I say to her?  Do I say.....Frankie has to come first again?

I'm laid back but.....I'm not that laid back.  I'm not super human, I have insane anxiety....i just hide it well.


Wednesday, October 7, 2015

No.....He is Not Mainstream


I re-read a blog I wrote 2 + years ago... It was called "I cured my sons Autism with Granola Bars and juice made in China" .   My Internet buddy Autism Daddy has cited that post (with my permission ) and I figured I'd update you all.

I wrote then how he looked recovered.....he still does....I wrote about inclusion Kindergarten....That kinda happened.....I wrote about mainstreaming in 1st grade....that did NOT happen.

I have talked about this phenomena that happens to us parents of high functioning kids, the one where we assume our kids will be ok by 1st or 2nd grade.  You go through early intervention, you do preschool you see amazing things happening and you say....this is going to be a one way train to normalcy.  WRONG.

Ok, maybe some people have amazing success stories.  Maybe some have all their dreams work out.  We on the other hand are still in a self contained class.  Don't get me wrong I'm thrilled with his placement.  He's in a 12:1:1 following typical curriculum.  He even has it in his IEP that he can push into a a mainstream class once he can get his behavior under control.....but....behavior is 100% not in control.

I could go on and on about his aggressive behavior but that is a long story and a blog for another day.

Its a strange limbo to be in.  He is in Cub Scouts with typical kids, he has 1:1 play dates with typical kids, he acts like a typical kid but.....the behaviors and impulsivity.....we are still working on that.

Still, 2 years after i poo pooed all those crazy treatments, i still look at them every once and a while.  We use essential oils and Epsom salt baths.  Do they cure?  No.  DO they calm?  Yes.  I called to look at NAET treatments and then kinda got sticker shock.

I don't need to fix him nor do I want to fix him but, I want him to be comfortable in his own skin.  Time will tell, I'm just done having expectations.  I mean I expect him to be an amazing boy, teen, man but.....I wont expect him to be the head of NASA ;)

With that..... He doesn't like Granola Bars anymore and the new juice we drink is actually organic but its Cheap because its from Aldi.  Maybe that's part of the behavioral regression....maybe that Chinese apple juice was the Cure!