it's all about trials and tribulations!

Hi all,

Today's post is needed.  It's real and it's what makes doing things very hard.  Here's the deal.....I have to go away for business.....just 2 days really but it's still 2 days.  I have never left my kiddos.  I just haven't.  Part of it is this fear of leaving JB.  Can just anyone, family or not, deal with Autism?  Geez, I even wonder if my hubby can deal with it on his own! 

Sooooooo...I have been talking about my trip to my son.  See, with Autism it is always about preparation.  You have to talk to them so that when things happen, they are ready.  My son, though, thinks the worst.  He truly thinks that I am leaving for good, that I am never going to return.  He has changed because of this.  He was doing really well at school, now he is crying and screaming everyday for me.  At night, when we go to bed he states.....

"I will always remember the good times we had together!"

Okay people, how do I not hurt from that!?!?!  Part of me says screw the trip,  it's true!  But I love my job and I know this trip will be a huge benefit.....it's also a must do!  I have to do this!  JB will be fine in the long run and I know that but really, getting to that point?????  I am not sure people understand the position I am in.  I think "normal" kids get the idea of coming back but JB...autism.....well, their brains don't just click that way.  He cannot predict the beyond, the future.  He cannot understand that going away has the plus side of coming back.  Nope, he thinks going away simply means going away!

I am dealing with tearful nights and disturbed sleep.  A son screaming for me in the middle of the night.

"Mommy, are you still here?"

It is hard to hear.  It is hard that my boy is stressing this much over a two day trip.  I hate it and honestly, I am so torn up inside.  I am getting greyer because of it, my worry lines are deepening....it's true.  Listen, nothing is ever easy or cut and dry with Autism.  It just isn't!  It is hard work.  It is heart breaking.  It is joyous.  That roller coaster ride effects you....it just does!

And so...I am emotional.  I think I hide it pretty well but I can't always because the trials and tribulations effect me.  They do.  And sometimes it makes me mad but then, this is my life.  This is Autism.  And as I have said before...I will fight the good fight.  For me.....for my family.....and for everyone around me!

TTFN,

Martha

Things that surprise me!

Hey all.....

I am writing today because hey, Autism is always surprising.  And let's be real about it, that is Autism.  It surprises you every single day.  I suppose that is why there is no cure....so many kids with Autism are so different.  Making it a daily surprise....

So let me tell you about my JB's week.  Bad and good!  JB had a 24 hour EEG....this is a test where they hook him up to a machine....he wears it for 24 hours.  He has a back pack and all these pads glued to him, connected to wires.  And those wires are connected to the backpack.  When they first started the procedure of gluing on the wires, he was okay.  But then......he got pissed.  Everyone at that moment was a "fucker".....and he did nothing but scream for his mama.  GUILT....I was not there, thinking dad would be the best to do it in case it got physically difficult.  And in fact, they had to strap him down....

That night, JB got to sleep with me.  Horrible night for me.  Every time JB moved, I woke up and moved his backpack......that was important because I wanted to be sure recordings were taking place.  You see, I have never witnessed a seizure but every single time we do an EEG, they record something overnight...while he is sleeping!  The EEG will tell us if he needs to continue medicine for seizures but....in reality, if nothing is recorded...well, who is to say being off the medicine is right????  What if he seizes off the meds????  It is so stressful....you want to make the best decision.  I want JB off meds but....what if he has a serious seizure while off meds??????  What if?

I have always been told not to think about the what if.....but with Autism, you kind of have to.  I find myself stressed out about should we do this, should we not????  It can be obsessive at times because you want to be sure you make the "BEST" decision.   And, honestly, it sometimes just seems unfair to always feel this way! 

So here is what I do.....I eat.  I am so frustrated with myself....I look like crap and I feel like crap.  But I don't know how else to deal with the stress of everyday Autism.  It sucks!!!!!  I am trying to work on myself, or at least I was....then I gave up...I just gave up.  I am in a place where....I GIVE UP!!!!  So sad and wrong.  But people, you have to know that this is true to a parent with a special needs child.  I feel like people don't get a chance to understand...they judge before they know.....Autism sucks.  It is so hard....Yet, at the same time, I would never change my JB because he is honestly so very special.

JB has grown tenfold.  He does things that I never knew were possible....but we have a long way to go.  And that is a-ok.....as long as I keep reminding myself that everything is a process.  That everything occurs in pieces or steps....for us, brushing our teeth is automatic.....but Autism????  NOT!  It's a series of steps....that has to be taught over and over and over.  It is not a one and done people.  It is not!  And sometimes, well, it just gets tiring.  Yet, I love JB more than life itself so I will deal...and I will keep dealing and I will fight and keep fighting....Autism is a daily fight.  It's something you have to handle and emotionally, you have to learn to be strong.  It ain't easy.....

It ain't easy....I will fall.  But I will get back up!

TTFN
Martha

Let's be real about stress!

Hi all,

I am writing today because you need to know that with Autism, the stress truly never goes away.  So many have said it will get easier.  Sometimes it does and honestly, sometimes it gets even harder.  In my last post, I shared how school has gotten better for JB but then, there are other things.  You see, my son escaped this week.  He literally escaped the house.  There are many things that run through one's mind when this kind of thing happens.....

First, it's panic.  Panic and worry.  Where did he go?  Will he be able to handle himself?  What if someone takes him?  Will he remember our address, even though we have practiced it 500 times? Will our neighbors, who all know the situation, come through for us?   It's so scary. 

Second, I feel like I cannot leave JB for a second.  It's so silly to say that but honestly, my husband and I were trying to have a quick, private conversation.....JB ran knowing we were out of sight.  It's almost like there is some manipulation there.....I hate saying that but he does know what he is doing, some of the time!  Maybe even most of the time.  Who knows....the Autism brain is so hard to figure out.  And that's obvious since there is no cure!

So....I bet you are wondering what happened.  Well, my husband and I opened the garage and ran.  We were screaming his name.  Turns out he ran back through our front door when he heard us coming.  In the meantime, I was bawling my eyes out screaming for him.  Our daughter came out yelling he was back home....it only lasted a few minutes but it felt like forever!  That adrenaline, the heart just pumping!  Stress!

You see, with Autism....stress never leaves.  The worry is always gonna be there.  Always, ALWAYS!  We do the best we can to problem solve.  In fact, we are thinking about a service dog for JB.  But that is a cost beyond belief.....hard on us folks. 

Look, with Autism, you have to always be on your toes.  You have to be ready for whatever comes!  Because every single day is different.  Some are easy, some are hard.  The stress you see....never leaves.  It's tough on all family members.  But we manage because we have to.  This is Autism.

TTFN
Martha

Autism has its' routine back!

Hi there,

It's been three weeks since I last reported.  JB has been at school and to my surprise, school has been quite a triumph.  He has been happy to go every single day, which is so different from last year.  I wish you couldd all see him run to his morning van.....he gets on the van, buckles himself in, and says good morning to all the kids.  Last year, there were times I could barely get him out the door.  But I think I prepared him differently this year.....this year, it wasn't you have to go to school.  It is that you "GET" to go to school.  And there is nothing better than getting to go to school!

My daughter is having a very different experience this year.  She has always been the one to be super excited to go to school.  I worry about her....she is having a lot of friend issues.  And, I worry that it is way too much stress for a 10 year old who already has enough stress.  You see, Autism is something she deals with daily.  It's not just me or her dad.  Everything revolves around what we HAVE to do for JB.....therapy 4 times a week, sometimes not going places just because we, as in mom and dad, don't want to deal..... Let me tell you, we are getting better.  I know I am becoming less afraid and more willing to take on the idea that behaviors happen.  But, I think my daughter has become so overly sensitive that anything becomes drama.....she thinks it is the end of the world and she has started to tell me that life is already hard enough because of JB.  That, my friends, is hard to take in.  Soooooo, what do you do????

I reach out.  I ask others for help.  In fact, my daughter has a mentor.....a daughter of one of my girlfriends, who has taken my daughter under her wing.  All I had to do was call and off they went for a girl date....I think having someone beyond mom to talk to is good.  But it still leaves me in a quandry because I am trying so hard to be attentive to her.....really, to everyone.  And it seems sometimes like I am failing.  Like it's never enough!  Ever felt that way yourself?  It's not fun....and I often realize how much I leave my own #selfie out of the picture....it's okay, because that is what we moms do!  I think!

So.......what's my point?  Well, it's amazing how tables turn.  The kid with Autism is having lots of positives at school.  He is doing things that are momentous steps, like running for student government!!!!  Helloooooooo?????  Go JB go!  It has blown me away and my thoughts for the future are in a positive place.  But then, my daughter's woes have broken my heart and filled me with so much worry that my cup truly overflows.....I am spending lots of time making sure she is ok.  Letting her know that she is amazing because she is....she so is!

I think there is always something......there is always something going on.  It's difficult to juggle, but we juggle the best we can.  Ya kinda have to as a parent I think!  Your energy is for them....your heart is for them.  You want to teach your child to maneuver through life so they can live their best life!  I just hope I am supportive enough....

TTFN
Martha