It's trying!

So today.....

Medicine is interesting.  I finally heard back from my son's doctor.  We are cutting back on the medicine he is currently taking for behavior......I hated that he was such a zombie.  But then his behavior......oh man.

Since we cut back, he has hit others and even threatened me.  In fact, yesterday he threatened me with a flashlight.  Just wanted to throw it at me. Why?  He hit a friend at school....in my mind, there should be a consequence for that so I took away his favorite video game.  That's when the threat to me happened. 

JB is 7.  Just 7.  Hearing your 7 year old threaten you is so difficult.  People do not understand and I often think they think I am exaggerating....I am not.  It's the hardest thing to deal with especially because just a few hours before, my son was telling me, "Mama you are so pretty, and kind!"

To me, it's both amazing and bizarre how an autistic mind works.  

So many people think it's just a tantrum or a kid being a brat. That's not the case at all.  Autistic kids have snaps.  Their brains don't work like yours or mine.  Their neurons spark differently.  Medicine is supposed to help.  For JB, it made him a zombie.  So this weekend we have cut back....that's when he threatened to hurt me....so then what?  Where is the happy medium?

There are no answers.  That's the hardest part for families.  No one really knows, no one can say for certain....if they could, then maybe there would be a cure but it's not that simple.  If you met one autistic kid, then you have met one autistic kid.  They are all different and unique in their own special way.  

So how do we fit into their world?  That, to me, is the the key! Be supportive, patient, understanding...realize that their intentions are not really to harm but that this may be the only way for them to communicate another issue.  It's hard to be patient.  It's hard to understand but you have to....you just have to!  

And it takes a village.  I so appreciate  my friends.  They listen, want to help......people need that.  They need a pick me up.  My life often needs a pick me up.  I hate that because that's so not me.....but I question my mothering, I question if I am doing the right thing, I question if I am paying enough attention to JB's sister.....she doesn't understand autism to its' entirety.  If it wasn't for friends, I am not sure where I would be....they send positive messages and advice that lifts me up.  And the silliness,  I need it because it makes me smile and brings me back to reality.  

Look, I am not trying to tell people what to do.  I am not trying to make people feel sorry for me.  I just want people to know that this is life in the autism realm.  It is not easy at all. Yet you have to keep going because you just have to.  Your kid needs you to.  You need to for you....

SO...I put my big girl pants on and do my best. 

Because my best is all I can do....

TTFN

Martha

IT'S UP AND DOWN

Hey...

So it's been a week and a half at JB's new, non-public school. The first day was tough for him.....very tough.  H screamed, kicked, hit, pulled hair.....you name it, my kid did it!  But then we got to the next day and the next.  JB has had a great week and a half.  No behaviors and in fact, he has brought home more challenging work that he can do alone.

"Go away mama, I can do this myself," he says.

UP

Talk about making my heart sing.  In fact, this change has brought my husband and I a sort of relief.  Not so worried because things are handled in a way that is right for JB.

But then, there is this......

DOWN

So a week before going to his new school, JB started a new medicine.  It makes him extremely tired.  At first, I thought that maybe it was just that his body needed to adjust.  But, that tiredness has not gone away.  In fact, I would consider JB to really be a zombie and his new teacher notices it too.

It really puts me into worry mode.  Yes, I have contacted the doctor and yes, I am waiting.  I am on pins and needles waiting because I want to fix this.  TODAY!!!  It's not my boy......he is funny, energetic, and has the brightest smile.  Now he just wanders and has bags under his eyes.....he is too young to have those bags! Honestly!

And then there is this slight thought in the back of my head....about changing schools so quickly.  What if these meds control JB enough to function back in mainstream?  UGH!  It's an evil game my mind plays.  The wondering, it's awful!  And I really have to fight that.  Thinking about what could have been can consume a person, and it often does!

The reality is, JB is succeeding in a school that meets his needs right now.  Yes, medicine may play a role in that but it's so hard to say because it's also a negative part of our lives right now, too!  So I will advocate and continue in the direction that fits and meets needs...that's the goal.

Autism is up and down.  It's simply that.....like a plane that takes off and abruptly lands.  But the plane ride can be pretty cool because where you land is always a surprise!

TTFN

Martha

The Agony of Defeat

Hi all,

Today my heart bleeds.  Yep, bleeds.   Today was JB's last day in general education.  I didn't think it would bother me so much.  I agree with the decision, I know that gen ed is not working right now.  So why, then, do I hurt so badly?

It's the agony of defeat!

I do feel like this is defeat in some sort of way! I guess because I wanted so badly for my son to make it in gen ed.....honestly, I go back and forth with my emotions.  I try so very hard to stay positive and keep things in perspective.  But in the moment, DAMN......it's hard!  I know that this move is probably best but then again, there is the "WHAT IF" in me.  The wonder....you want everything to be perfect for your kid.  When it's not, it's sometimes hard to take and even hard to comprehend.

So what do I do?  How do I keep myself in check?  I have to fall sometimes.  It's the getting up part that takes effort.  So much effort that you need a hand.  I do see now that there are hands out there, willing to help pull me up.  And I need those hands....because right now I am drowning.  So much so that I am questioning every little thing that I do.....it's kind of ridiculous!  But it's real, too.....

Autism is really such a ride.  Makes life so up and down.  Trying to deal with it can be both difficult and absolutely joyful.  Just like a roller coaster....you are okay going up but going down can turn your stomach.  So as hard as it is, maybe the key is forgetting your feelings.  Actually, maybe it's about letting your feelings go.  Let the child be the guide! --Thank you SR for saying that! After all, it's not about me or my husband.....it's about JB's happy place!  So I get selfish for a moment, everyone deserves that.....but getting back to the idea of who this is about is the most important thing.  It's not about me, it's about JB.  It's about making sure he is the best him!  And the only one who can assure that, is a healthy me!

So screw you agony of defeat! 

I refuse to be defeated!  This can only move us forward! HA!

TTFN

Martha

Measuring Success

Today's question......

How do we measure success????

Think about that for a minute.  I think, as adults, we often equate success to how well we are doing.  Some of us even equate it to how much we make.....but that's not always the case.  Sometimes success is all about the little things. It's the smile on your child's face, it's the test they pass, it's seeing them score a goal, it's seeing them finish a book they absolutely loved reading.....

What happens when they don't succeed?  How does that change you, your thoughts?   

This past week, JB did not succeed.  He did some things that have made school decide that maybe, just maybe, general education is not right for him at this time.  Hearing that hurt.....because you want so much for your child to do well.  And when they don't, well, it hurts.  

Maybe JB did succeed though.  The running away, the tantrums, and finally a moment where he strangled himself with a cord at school (yes, UGH!)....just maybe those were all cries for help.  Maybe it's his way of telling me that something is not right.  See, JB can't always express himself.....something as simple as stubbing a toe brings about chaos.  Brings on a behavior. 

So maybe...JB's actions are his way of asking for help.  Maybe that is his success.  Maybe this is what HE NEEDS.  Maybe, just maybe, success for JB is measured by the tiny actions that get attention because that attention is for the betterment of him.  And we are getting there.  We also have a long road ahead of us...a meeting to decide what is the best placement for JB.  Medicine to take that I am worried about.   But if all of this helps my JB........then that is SUCCESS! As stressful as it all is, that is success!  And knowing that has to help keep me going!  It just has to!

TTFN,

Martha