IS ANYTHING NORMAL????

Hello all,

Today's post is something.....you should know.
 

You should know......

with Autism, nothing is normal.  Days that seem normal are often few and far between. And that's okay because in some ways, it keeps life interesting.  Christmas in our home was fun but now it's been a week off from school and with this change in routine, well, things haven't been easy necessarily.

We have had a lot of ups and downs.  And it's not just JB......it's been my husband and me.  We pull it together for the kids then blow it with each other.  The funny thing is that we are upset with each other over such dumb things....like what happened in the Mid-season finale of Marvel's Agents of SHIELD......duh, we have it on DVR.  We could watch it again but no, it's just better to fight about what we think happened.  So stupid!  We had a great date night, came home, argued over our phones.  Again, so stupid!  But I think it's the stress...it just consumes us because we have to hold it together.  Then it comes out in other ways.  No wonder why the divorce rate for parents of kids with special needs is so high!

It's hard!  It's tough.  Today has been the worst, but I probably say that everytime JB has a behavior.  See, JB threw a toy and broke it this morning.  He has never truly recovered.  We spent an hour just listening to him scream about it.  We thought it was over, but he began throwing other things.  Threw the remote at the TV, now the TV is  broken.....calmed down and then started up again 2 hours later.  But this time he threw things at me, at my face, told me I was an F***ER!  What do you do with that?  I ignored and gave time away but......seriously!  What do you do when your own kid cannot control himself and he knows it?  It's heartbreaking and devastating!!!  And what about his sister, who witnesses these chaotic moments?  Today she has just hugged me and she has not left my side.....she keeps asking me if I am okay.....Am I okay?  Let's be real......I don't know!

But even if I am not...I will fake it.  Put my smile on and go.  That's what I have to do with Autism.  JB does not mean to do what he is doing.  He snaps, and during these snaps he is very much aware of how he feels.  He will often say that he feels like a monster and that he hates it!  He often will say that he does not know what to do.....so I try very hard to remind him of his coping strategies during these moments, my husband and I keep trying to remind him to breathe or "Smell the flower and blow out the candle"!  The positive is that he is now trying to do that.....but we have to remind him.  It's not something he can do on his own.......yet! But in time, he will.  And I hold onto that because I have to!  I need to.

So what now?  Well, we keep up the therapy.  And I make sure my daughter is okay.  AND, I talk to my friends who I know love me dearly!  Thank you.  What and why I write is for people to understand.....I want people to understand Autism, I want people to understand me, and maybe I write because it's an outlet.  An opportunity for me to get feelings out......I need it!

TTFN and Happy New Year
Martha

Today Was Golden

Hi all,

Today's post is going to be a quick one but I wanted to share a small moment that has put me over the moon.  My JB was the star of a play in his school's Winter Festival today.......he played the Grinch!

I am currently on break and was so excited because it meant I could go see my baby perform.  Not that I hadn't already, as we all have watched How the Grinch Stole Christmas a gazillion times since he got his part.  He can recite every line.....and sings along! But there is something special about being there in the moment.

With Autism, you always wonder how things will go, will it be an off day and a no go on the play or will it be a day that he shines.  I think I worried all the way down to JB's school.  I was so nervous for him.  My stomach was in knots.

Grandma, Grandpa, Sister, Daddy, and I all took a seat.  The room was crowded with parents all hoping to catch the same special moment I was hoping for.  And they did!  Kids sang, kids danced, kids read poems..........and then it came time for the Grinch! At that moment, my JB got up and our eyes met. 

"Mama, mama.....you are here! This is for you, Mama!"

Then......he became a star.  He performed his little heart out and made us all so proud.  I want to savor that feeling forever and during the difficult moments of Autism, I want to rely on that small moment.....I hope it gives me strength.  It's so easy to let the hard parts take hold of you so I will let this memory warm my heart and thoughts....I will hug this memory during those tough times.  I am a proud mama to one Autistic child that is simply amazing!  A child that is loved dearly! 

TTFN

Martha

A Day Without Autism

SO......

My daughter is turning 10 this week.  It's incredibly shocking to me because I wonder where the time went.  And I also can't believe that I am old enough to have a 10 year old but my wrinkles and grey hair say differently!

This year, my daughter asked for something that I found gut wrenching.....she asked me for a day without autism.  

A day without Autism!!!

Unfortunately there is no day without autism.  It's always there....it always will be!  But what I can offer her is time away.  Sometimes everyone needs that and I so get it.  Sometimes you need to separate yourself for sanity's sake.  You see, autism happens to the entire family and not just the child who has it.  

My daughter's request is a huge, telling sign that she needs space and attention and a break.  I am sure she thinks that JB gets all the attention and essentially he does.  But she doesn't see it as it is.  He cannot entirely care for himself, his sensory issues have me feeding him daily, his behaviors are challenging, his let down after a behavior is heartbreaking......but my daughter????? She sees time spent with JB not what I HAVE to do....so I try really hard to attend to her with a hug or high five or a special dessert or a simple word of encouragement.  It seems like it's never enough......

SO..... 

I will honor her request with a day off from school, a movie, and a special lunch.  The kick in the gut....wait for it...... she'll be with her dad, not me.  She asked for that.  Kinda hurts but also I can see where she may want to separate herself completely from Autism....and I am a piece of Autism because JB is all about his mama!  He prefers me....all of the time!  That's hard in so many ways! Oh so hard....another story, another time! 

Happy Birthday to my dear sweet angel who so deserves the gift of time that is all about her....stress free!

TTFN

Martha