Has anyone seen me?

Hi all....

So summer is close to over.....and JB has been out of summer school for 2 weeks.  At first it was fine but then boom, out of nowhere.  JB has changed.  Mornings, and sometimes evenings, have become sorta insane.  It's like someone flips a switch every morning....JB gets crazy angry, maybe even #hangry.

I hate you!

I am out of this family!

You suck mom!

You suck dad!

You are a terrible mom!

I am running away!

There is a new home somewhere!

I don't like you!

It's so hard because you have no idea how things turn around.  We wake up to hugs and cuddles, then about 30 minutes later.....out of the blue, it's truly chaos.  Questions of what happened?  What set JB off?  But there is no answer.  After an hour...we spend another hour with a boy who is so sorry.  He cannot control himself as he asks us to accept his apologies.....

My husband and I have learned to just "Elsafy" it all...that's my way of saying "Let It Go"!  Haha, get it????  Those of you Disney fans know....and it has gotten easier to let it go because every time we go into this mode, my wall goes up...you deal because you have to.  You cannot take it personally!

But, with that wall....I have recently realized that I have truly lost myself.  I don't know who I am.  I put so much of myself into everyone else....and I am willing to admit that I have given up on me.  My energy is really for my kiddos, my husband (who is battling his own fight), and everyone else.  I am better at being the rock for everyone else.  Not for myself, that's for sure....

Whose fault is this?  I could blame Autism.  But really, there is no one to blame but me.  I am in charge of me.  But honestly, I have just smashed me down.  Put myself at the bottom of the barrel.  To the point that I doubt every little thing.  I have lost me.  Is that fair????  Absolutely not and I have to find me again.  Finding me will help me be a better me for everybody else. 

Autism will always be Autism.  It will always be hard.  It will always be a contender in this bout called life.  Autism may not change but I sure can.....and yet,  I find myself hiding.  Not sharing, not talking.  Not wanting to bother anyone.  Look out peeps, I am trying to grow.....I am working on me.  I have to.  I just have to....I have to be a better me.  It is definitely time!

TTFN

Martha

You have to advocate.....

Hi,

I think sometimes feelings get in the way of what you have to do as an Autism parent.  We have recently had an experience where one of JB's therapist is just not the right fit for JB.  It's actually been quite a fight....But as I told the owner of the ABA company, I absolutely must think of him, must think of his progress, must think of his emotions.

Everybody is different.  Some people have it, some people don't.  I give this therapist a ton of credit as she really did try but......there was no energy for JB.  None. And that is sorta what makes me feel bad....I hate seeing someone removed from a job, especially when they are trying.  But as a parent of a special needs child...it's important to think clearly and fight for my kid.  He cannot fight for himself.

I think learning to be an advocate is super hard.  I think it is so easy to believe that everyone has your child's best interest at heart.  I think they mean well...but in reality, the parent knows the child inside and out.  Your gut really should be listened to.   Your heart should be followed.  I will say that it will not be easy....and yet, easy.  Because speaking for your child should be easy....It's the listeners that need to work at truly hearing.

Mom....Dad.....don't be afraid to speak up.  Ask.....repeat.  Do so because you want to be clear.....your child deserves it and so do you.  You got this!

TTFN
Martha

One Word is NOT Enough

Hi all....

Happy halfway through summer!  I wanted to share that I was recently asked to use one word to describe Autism......my reply was that I just couldn't.  And here is why....

Autism is....

hard

crazy

tough

unexplainable

emotional

sad

But it is also......

fun

joyful

interesting

silly

sweet

inspirational

I have to be honest.  JB is who he is because of Autism.  I am not sure I would ever want to change that (and I think I have shared that plenty of times before).  What I really am is.....

HOPEFUL

I am not necessarily hopeful for a cure.  Nope, not really.  It would be nice but, I just don't foresee that anytime soon.  I am hopeful, though, that my son will have the skills to have a really good life.  That is what my hopeful is all about.  And I will do everything I can to make sure of that!  Which brings me to the next word......

sacrifice

You sacrifice a lot in the world of special needs.  Things do suffer, not intentionally at all but really....things do suffer.  Friendships, family, marriage......life really revolves around what I, what we, HAVE to do!  It's not easy but I would never give it up and I am thankful for my next word....

LOVE

Autism has shown me a love I never knew was possible.   It has made me see things differently.  I am well aware of how others may view my family when tantrums occur in public.  I am well aware that my daughter struggles with attention.  I am well aware that sometimes my entire family is depressed.  I am well aware that my husband and I have no time together....ever!  But,  the thing is....love keeps us all sane...it keeps us focused on our journey....it keeps us together!  Our lives are full of hurt and laughter but the laughter definitely outweighs the hurt because we understand the sacrifice and the hope that keeps us going.  Love.....this special love, this unconditional Autism, has moved me to be better in so many ways...it also puts me last on the list, which brings on self doubt. But for my family.....my self doubt is just a blip on the map.  And, I have hope that I will find myself in this journey...that I will focus on me a little bit more so that I can be the best me I can for a wonderful girl and a wonderful boy who just are who they are.....the best kids ever!

TTFN
Martha