thankful

Hi all...

I have had a week off.  A week to enjoy being home, a week to be with my kiddos, a week to just enjoy being me.  Usually a week off is hard.  Autism is a world of routine and schedules.  So not knowing what to expect.....well, was a major stress point.  But this week was really unusual or out of the norm.  Not what I expected at all.....maybe JB is maturing, maybe he is understanding--not sure!  But what a week!  And I mean that in a good way!

We had big milestones.....things happened that made my heart just so happy.  You see, JB ate Thanksgiving dinner for the first time.  Just turkey and mashed potatoes but he did it!  That is a huge deal for a kid who usually only eats Campbell's soup (come on Campbell's lower your prices!).  JB eats nothing but soft items at dinner....he shows no interest in food unless it's Doritos.....and yet on Thanksgiving, we had a blessing.  "I like turkey!"  It's all I could talk about all night...I am sure everyone was sick of me, but to be honest, I always feel like no one truly understands.  They nod, they smile....but it's so much more than that!

So my JB also helped decorate for Christmas...granted he was very much more fascinated with the ornaments that made music but that really was okay because seeing him dance to "Jingle Bells" is one of those things that brings a giggle....I could watch him dance like that over and over....but, here's the thing about the tree....he gave a compliment, a genuine compliment that was not prompted.  In the Autism world you have to give many prompts.  Saying thank you might be something people take for granted...but I have to prompt my child to say thank you.  I have to prompt him to say many things that you and I simply take for granted.  Please, thank you, excuse me, sorry....all things I have to prompt.  And then, I also have to teach him to mean it...but when my boy is in the moment.....ooooh.  Sometimes it's so easy to forget that Autism exists!

So once our tree was decorated, I expressed to JB how beautiful it was to look at.  Here is what he said,

"No, you're the pretty one mommy!"

It was one of those moments, those heartfelt moments that you want to capture and hold onto forever.  A moment that made me tear up.  To hear that is golden.  Something that us Autism parents don't hear often....You see, it's true that many Autistic kids do not show love the way many are used to.  And yet, some show love in so many more ways than anyone can imagine!  For me, that one phrase....that one comparison....well, it told me that I was so very much loved!

When my kid was diagnosed, I had to attend classes in order to get services for him.  I remember being in class and we went around the room talking about ourselves and what we wanted for our child.  My hope was just to hold JB's hand....That was all I wanted because showing love wasn't something he did.  Hold my hand...that's all I asked for.  Well, I got that and so much more.....my boy loves...I am lucky because I feel it everyday in the simple things JB does.    A touch, a smile, a giggle, and a simple word.  All of these things I am thankful for, I am truly blessed with.  

So.....thankful.  That word!   Thankful!  Please be thankful.....love comes in so many different ways.  Please don't miss those small moments.  Those little things that mean so much.  You are worth it.  You deserve it!

Happy Thanksgiving!

TTFN,

Martha

 

Is it embarrassment or shame?

Hi all...

Long time since I last blogged.  It's been hard to write recently, just too tired.  It's go go go all the time and I know I am not alone in that feeling!  But I really need to write today.  It's good for my soul....and I am compelled to write because of an incident that my wonderful friend had.

You see, she was getting her kids a haircut while another mom and her child were doing the same.  That child was screaming....and the mom felt bad.  In fact, she found it necessary to tell my friend that this was because her child was autistic.  It made my friend sad....it made me cry!  I get it....I so get it.  That feeling of needing to explain.  That feeling of, "What are others thinking?"  That feeling of,  "I am doing the best I can!"

Is this shame?  is this embarrassment?  I don't know.....so then, what is it?  I am not ashamed in anyway but do I think I am being shamed in my ability to parent????  By outsiders, sometimes I think so!  Do I feel embarrassed at times?  Absolutely!  In fact, I can remember a time in Target when JB was having a tantrum.  An older woman had to tell me how to discipline my child.  I have to say, I really believe her intention was to help.  Yet it also belittled me.  Like I can't take care of my own kid.  I instantly said, "My kid is autistic!"  Like I had to defend myself....WHY???  Is it because we are lead to believe that if we cannot control our kids, then we are not good parents?  Or maybe it's that people don't understand.  What works for one child does not work for another, then you add autism into the mix and that's a new can of worms!

So...how do we solve this problem?  How do we get to the point where parents don't have to explain themselves?  How do we moms get to the point where we don't need to feel like we have to explain things?  I guess it's just showing kindness.  I love that my friend's response to that mom, who probably needed a kind word, was simply a...."You're doing a great job, Mom!"  Just think, if every person simply said that one phrase to a mom in need of hearing it, then that rolls forward into a multitude of positive vibes.

Being a parent is hard.  Dealing with autism is hard....really hard!  It's easy to feel down in the dumps.  Far too easy! In fact, I feel down far more than anyone knows.  I am simply good at disguising things!  I dress up, put on make up, smile....see, hidden!  Look.....this is truth.  This is matter of fact!  I don't want to feel shamed.  I do not want to feel embarrassed!  But neither of those things will go away unless I change, unless we all change. The village has to to be aware and observant.  Listen, all I ask is that you know me.  That you know us!

Please know that a struggling parent may be dealing with far more than anyone ever knows!  So...I go back to my friend.  A kind word...pass it on!

TTFN
Martha

Relentless

Hi All,

Today I am writing about the word relentless....because that is what life sometimes is.  That's what Autism sometimes is...relentless, inflexible, and yes...even at times harsh. 

Saying the word harsh makes it all sound so horrible.  But at times it is horrible.  But it's not necessarily JB.  It's the things you deal with around the Autism disorder.  For example, JB has come home recently with these horrible bruises that are as black as night.  When I first saw them, I was in shock and immediately had to have answers but I forgot that JB cannot really express himself.  He tells bits and pieces of things and 2 weeks later you just might find out the whole story....might being the key word.  Mama Bear tried to control herself but the more I thought about it, the more upset I became because what happened???? AND, I am his advocate.  His story has to come through him and through what I can find out..... I'm kinda like a detective.

Three days later, here comes another nasty bruise and the day following, a bloody nose.  For me, that was it.  WHAT HAPPENED?????  My kid came home from school hurt and there was no communication.....WHY????  Out of anger, I emailed JB's teacher.  We spoke that night and honestly, I have a better understanding of what happened to my boy.  Look, the bruises are still a concern and now the teacher understands my point of view.  The bloody nose????  Well I understand how it happened and it was not from being bullied like I thought.  The bloody nose is a story for another day....

But...here is what I do need to say.  Parents.....you are your child's advocate.  Communication is key to their success....it's even more important when they cannot advocate for themselves.  When they just....CAN'T.....for themselves.  And it takes a toll....because it affects you and everything you do.  That relentless stress is always there....it encompasses all you do, all you think about.

Relentless.....that word again.  I think I hate that word.  But then, I think about my inner Star Wars geek...Jyn Erso from Rogue One said, "I rebel!"  Well...maybe I do too!  I rebel!  Autism may be relentless but I do not have to succumb to it because I can advocate and say what needs to be said so that my kiddo is safe.  Advocating for things that you feel are right is just....because it is your child.  So...I rebel!

TTFN,
Martha

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 

Lessons learned from vacation!

Hi all....

I am chiming in quickly as I had plenty of time to reflect on the drive home from our vacation with Autism.  Three hours of kids asking, "Are we there yet? Are we there yet?"

I gotta tell ya all, our vacation had ups and downs but geez, I learned a lot about my JB.  He is quite the thrill seeker.  The Santa Cruz Beach Boardwalk was a dream for him.  He went on every ride he could, which was truly all of them, and there was no fear!  But let's talk about lines....in the beginning, waiting in a line was quite difficult.  A lot of yelling and screaming but once JB realized and understood that was what it would take to get on a ride, he became a lot calmer and more willing to wait.  The waiting was worth it for him!  That is a huge step forward because patience is something JB lacks.

Eating was an issue.  He was not willing to give up his fun for food.  Yet, when he was hungry he was #hangry!  Oh man, that kid would yell at us.  Tell us how dumb we were and that we were the worst parents in the world.  I know it's hard to believe that but people, it's true.....He screamed at us, telling me that I was nothing but a fat mom.  Telling dad that he was the worst dad ever.  He needed food but would not eat because he didn't want to miss out on any fun!  I packed snacks but they didn't suffice really.....

We also hit the beach.  JB was having a great time until he got knocked over by a wave.  In fact, the tide dragged him under...and dad had to rush in to pull him out.  That was it for JB, he was done!  I felt bad because our daughter wanted to stay at the beach....we chose to leave because of JB.  We headed back to the rides.  And even when he was there......he couldn't come back from his beach experience as quickly as hoped.  We decided he was #hangry, so we made a deal....eat first then rides.

SO.....you want to know what we learned?????   Not just what happened right?  Well, I needed to build up to it....give you some behind the scenes.  I learned that I have a lot to learn.  My hubby and I both do.  Everything we do with Autism is new, and the way people react towards what they see is difficult to take in because they just don't know....

SO.......

1) I learned to just let it go. (to Elsafy it)...it is what it is and the only thing that matters is that moment with my family.  No one else matters, their thoughts don't matter, their looks mean nothing.  

2) Plan meals....and be more specific with JB, so he knows what is expected of him.  Let him know that eating is a must do!  I think we will stay at a closer hotel so we can walk back and forth easily....lessening distractions.

3) My hubby and I should have split up.  Our daughter wanted to stay at the beach and play in the waves.  We should have split up so that she could have had her time....but we didn't think about that, until later....

4) We learned that the word "NO" is something that JB needs to understand.....when we say no, we mean no and that is that!

5)  We also learned that moving quickly helps push through a behavior.  If a behavior is happening, we need to be aware and keep moving...giving JB something else to focus on!

BUT.....

Despite all this crap that I just discussed......the good outweighed the bad.  I learned that Autism can handle a vacation.  That change in routine is sometimes okay.  That I need to really not sweat the small stuff and focus on simple things so we don't overdo or push too hard!  Simple plans are the best plans....go with JB's flow and that is okay!  But....I also learned that we don't have to do everything together...there are 4 of us.  An even number that is easily split!  I learned that my daughter also needs to do her thing....and that may mean, splitting the family up.  Is that okay?  I mean it's supposed to be a family vacation.....wake up, mom!  It's truly about happiness, allowing us all to have our moments!

We also learned that, YES, we deserved that vacation and that, YES, we need to do it more often because we all deserve it.  It was good for the soul and I felt happy, oh so happy!  It's amazing how life changes when you have kids (special needs or not).....seeing their joy makes a parent's heart happy.  To me, it was the best vacation ever....seeing my family happy was the purest joy and that's all I will ever want!

TTFN

Martha

Austism and Vacation

Hi all....

I really wanted to share today about the anxiety of going on vacation with an autistic child.  My husband and I have spent too many years in fear.  We have done nothing because we have worried about how JB will do if we go somewhere......At this point, we have made a decision and that decision being, we have been unfair to ourselves, to our daughter, and really to JB.  Everyone has missed out on having a good time TOGETHER!!!!

WE have missed out on important family time.  On time that we all need because mom and dad (my husband and I) have been scared.  We have been too scared to try....so worried about how JB will behave, having to pack all the right things, whether he will be able to adapt or not.  And yet, this summer, I am realizing that maybe this is so wrong.  We are missing out on life.  We are creating a negative experience for our daughter and really for JB, too.

So, we are headed on a vacation...our first one as a family without grandparents or anyone else.  A true family of 4 vacation.  And truth be told, I am scared.  There is so much to think about, so many worries.  First, I want to make sure I have enough medicine for JB.....if he doesn't have his seizure meds......what will happen?  Then, he needs so many different foods.....he doesn't like ANYTHING!  He eats NOTHING outside of Doritos, pop tarts, and Go-gurts on his own.  I feed him smoothies and Campbell's soups.....because he won't touch any utensils.   He will only drink boxed, strawberry Yoohoo......it's beyond crazy and yet, so much to plan for.  Why the hell am I planning a vacation when home is so much easier?????  I mean really!!!!!

But that is just it.....we ALL deserve something that is fun and worth doing.  We have to live life and have experiences that make memories.  Just because my son has Autism, well, that should not stop life.  It may make life difficult at times but he deserves to have experiences outside of therapy and school.  I get too worried about missing his therapy......I get too worried about how he will handle new experiences.  Who is at fault?  Me!  I cannot live in fear...SO, we will go on vacation.  Give our entire family a chance to have a life beyond therapy.....because it's real.  And it is a part of learning, really, learning to enjoy life and learning to have new experiences that are well deserved!

I am scared to death to take this chance but I am also very excited.  It is needed.....it is necessary.  And, we will roll with the punches because we have to.  And really,  my husband and I have to learn to let go...let things happen and just be there to guide.   Because that is how we all learn. Experiences are necessary for everybody for so many reasons!  Wish me luck!

TTFN
Martha

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

Thanks Styx

Hi all,

Have you ever heard that song...."Too Much Time On My Hands"?  Well, right now, that is me.  I recently had surgery.  Surgery is always hard...granted, I am doing really well.  Really well!  BUT, I have way too much time to think about things.  And one of those things is really a reflection.  And part of my reflection is because of  book I have read called, Kids Deserve It!  Kids deserve to be loved.  They deserve to be noticed and in the teaching profession, sometimes kids put on a persona.  One that hides who they are....and I so get that!  I do it too!

For me, my disguise may come in a different form.  Almost like everyday is Halloween.  I dress up, I put on make-up, I accessorize.....all those things make me feel good but they can also be a cover up.  Like hiding.  But why?  Why is it that adults don't want to bother anyone with their emotions and problems?  Why?  In my mind, I think that I just don't want to bother anyone.  But a good friend said...."It takes a village..."  She is right. It takes a village to raise kids but also to raise adults.  Now I don't need raising at all.....but, I do need emotional support!  Being a mother to an autistic child is hard....and a joy, all at the same time.

OK but now back to that surgery thing.  I feel helpless....my poor JB has to understand that mom is different right now.  And at first it was okay.  But 6 days later....a new worry has shown up.  JB has sobbed daily about getting his "regular mom" back.  He "hates' this new mom....the new mom who cannot help him at all because I physically CANNOT at the moment!  He has risen to the occasion...he has started putting himself to bed, he is eating without help, he is even dressing himself!  Those are huge successes....HUGE!  I have had to do everything for him but he is proving to us all that he can be self-sufficient.  And that's what I want for JB.....for him to be able to help himself.  And to have the confidence that all kids, and adults, deserve!  But to have that....sometimes a supportive word of encouragement is necessary.....one smile, one compliment, one joke can carry a person far.  Kids need that, adults need that....and that's what humanity has in common!  We all need support in one way or another.....it does take a village!  I am learning to be okay with that!

TTFN
Martha

Doubt

Hi all.....,

I am writing today for many reasons.  At first, I had planned to write about my hubby who is still at this point of struggling with the idea that Autism will forever keep his son from being what he had hoped he would be.  But then, I was given something by a friend....a key that says "believe".  It was given to me because this friend sees that I do not believe in myself.....I was so touched but also, she is right.  I do not believe in myself at all.  That is super sad to admit.....but I have to admit it because I am sure there are other moms out there that feel the same way I do. 

My energy is for my husband, my daughter, my son, and my students.  Yep, I am a teacher!  

My energy is for them and often, my students save me.  They truly do, because they keep me thinking and they keep me fresh and that really helps me in my daily dealings with Autism.  It is not easy at all but I realize that I have built up a wall.  A defense mechanism so that I can be there for my students 100%.....then I come home and give my all.  But damn, it's really hard.  I think I am there for everyone except myself.....I don't have the energy for me!  It's so sad to admit that!!!!  But it took that gift of the believe key for me me to see that!

I am also reading a book called Kids Deserve It by Ted Nesloney and Adam Welcome.  It's supposed to be about kids but I am realizing it's also about me.  Who I am...as a teacher and as a person.  It's become sort of a diary for me.  I want to keep reading because I feel like those guys are championing for me...just like my friend did with the believe key.   My favorite chapter so far, is called "Dealing With Doubt" and I must admit that it struck a chord with me.  I doubt myself in many ways.  I doubt myself as a mother, as a teacher, as a friend to others. 

"Doubt can sometimes lurk around us, but when it gets inside us, it's hard to shake loose."

I hate that I doubt myself.  Not sure many people know that I do because daily, I get up and put on cute clothes and make up.  It's a mirage really.  Not always but sometimes.....and then there is my work.  Work I am thankful for....I pour myself into it because it is my getaway....I do my best then I wonder if I did enough....just like I do with my personal life....It's so sad to admit the way I feel, hurtful too.  I don't want to feel this way, I don't mean to feel this way.....but, life is hard.  Autism is hard.  How do I change my mindset?????  I don't know.......but I do know that a support system is necessary.  I am still learning to be open about my vulnerabilities.....I often hate to share because other people have things in their own life to deal with--but maybe that is wrong of me.  People would not ask to help if they didn't want to.  And often, I just need an ear or a simple word of encouragement..... a word of encouragement.....hmmmmm.  We all need that.  A simple sign to let us know we are cared about!  Well, from one mom to another...I care about you!

I care about your fight, your are not alone.  I won't let you be.  

It's amazing what a word here and there can do to boost your spirits. Please know that it is appreciated....my days are not always easy.  Autism is not easy BUT there are also amazing things that happen and I need people to celebrate with me.  Because little things, make a huge difference in the life of a mom who doubts herself.

TTFN

Martha

Promotion

Hey all,

This week JB promoted to grade 2.  I really wasn't into going and kinda thought a promotion from grade 1 to grade 2 was kind of dumb.  But then, someone reminded me that it's all about accomplishments and I cried!  How silly of me not to think about that......but what she said made me reflect on the progress JB has made.

He has come completely out of his shell.  He was the star in a school play, told jokes in the talent show, strived to be a top reader, loved getting 100% on his IReady computer tests, and was in the school Spelling Bee!  My kid has done all these things, all these wonderful things.....but this is not all he has done!

JB is popular.  I didn't know this about him.......BUT, I received an email from his teacher on the last day of school.  The email was just to tell me how much she would miss JB.  But in sharing that, she shared that JB is loved by all staff.  They always seek him out for a high 5 or hug and he brightens their days when things aren't going so well.  Every morning, he acknowledges the office staff and wishes them a good day.  And he gets along well with other students.  On the day of his promotion, the other kids all gave him congratulatory high 5's but there was one kid, one kid who hugged Josh so tight.  A 5th grader who told JB that he was like a little brother and he loved him more than anything.  He hugged JB for a long time and cried....when asked why he hugged JB for so long???? The response was that JB is "my little buddy and makes me so happy!"

Oh man, so powerful.  That's what any parent wants to hear for their kid.  But me, my kid is autistic, and you want them to have the life you hope for them.  At this school.....he does!  Kids with special needs need the kind of love that makes them feel like an everyday kid because essentially that is what they are......I feel like shit missing JB's promotion.  I had not thought of it as celebrating accomplishments.  But I should have......so shame on me.  But, it truly made me reflect on his year and his growth which is a good thing.  Amazing things do happen.....little moments are big.   He has become a little man and even though we still face challenges, there is hope!  That hope takes me far and I will l forever carry that hope forward because I know my autistic kid can!

TTFN
Martha

It can be confusing......

Hi all...

Today I write out of confusion....I am not confused but in some ways I really am.   And you need to hear why!  So Mother's Day for me really happened 2 days beforehand.  JB was in the school talent show.  He told jokes!  I was shocked, first of all, that he wanted to perform.  Secondly, he wanted to tell jokes.  But, he was amazing!  JB reminded me of a true comedian....his punchlines were on point and the delivery, it was just so him.  I was so proud and honestly, that day was the greatest gift for many reasons.  His courage, his humor, his happiness.  That is truly what you want to see for your child.

But then a week later comes and it's the exact opposite.  Within one week we went from a major high to a major low.  JB had had a tough week but by the time he got to Friday, he had bit his teacher and slapped her.  Honestly, I am appalled by this...it is not JB.  That's not my kid.....at all! So personally it's devastating! 

And it makes me mad at Autism.  Damn Autism.....I mean it! 

But I have to get over that.  Instead, I have to think, "Okay, what can we do to make it better!?!"  With Autism it is always forward thinking.  It's sometimes uncomfortable and it's definitely not easy! But you do have to think that way...

You see, JB needs us to think that way.  He gets lost in his thoughts and will often tell me that he is a monster.  JB is in no way a monster but that is how he thinks of himself which makes me hurt as a mom.  His monster needs help controlling himself and how do I do that?  Forward thinking!  That's not to say I don't dwell, the dwelling is sometimes too much, too overwhelming.  But dwelling gets me nowhere.  It doesn't help anybody.  

Getting through the ups and downs.....getting through the roller coaster....getting through the confusion...it's very hard.  My advice is to think about those small moments that blow your mind, those small moments you can't wait to share with your friends.  And it's so gracious of my friends to be blown away for me.....I thank them for acknowledging JB and our good fight (and they know it's a fight!)

Small moments save me.....they truly do!

TTFN

Martha

It's beyond emotional.....

 Hello all......

I am back.....and have a lot on my mind.  This week was beyond stressful as JB had his annual meeting to discuss goals and progress at school.  I don't know if people truly understand how hard it is as a parent to hear how hard things are for their kid....I also feel like my previous experiences with these meetings have not been fun.  Yes, they had good things to say but....there were also bad things.  Now, don't get me wrong....I don't think they meant for it to sound bad at all but in the grand scheme of things, my boy was not happy at his previous school and neither was I.  It just was not the right fit....

The school he is at now is amazing.  It's a non-public and they are more capable of handling behaviors that hinder JB from being a student in a general ed setting.  He is having experiences that are necessary.....for example, he has gone to McDonald's to buy a shake.  It sounds so simple but a necessary skill needed to live life.  You buy something, it costs money, and you might need change.  He has had an opportunity to star in a school play and will be telling jokes in the school talent show.  He is the JB I know and a JB that his previous school did not get to see.....which bums me out!

So, when this meeting came about I was very nervous.  I was afraid to walk into a meeting where everything would be a drag.  Instead, to my amazement, it was completely different than I thought.  I spent hours before with knots in my stomach...so worried that we would all be on different pages.  Instead, we all agreed that his now school is really the right fit, what he needs...because although he has made great strides in academics, his behavior is still holding him back.  There are still goals he needs to work on.  And we all know that early intervention is key to successes later on....I walked away from this meeting thinking, "Wow!"  That was nice! All my anxieties were gone...

I think there are so many pieces that a family with a child who has a disability has to take on.....For me, Autism is a daily process.  What people don't know is that we are constantly doing something.....therapy 3 days a week (one of those days being a social group that we have to drive to), parent meetings with the ABA company, my own goals for the ABA company, school meetings......and then there is just everyday life.  Things we adults have to do on a regular basis....like go to the grocery store, clean house, work, etc.  The list could really go on forever!  There are other people you have to think about as well....making sure siblings are getting what they need.  It's a lot! 

Today's post for me, is important.  It's important that parents feel like they are part of a team that is working for the success of their child.  You want to hear that your child is successful, even though there still may be work ahead.  You want to know that people love and care....that needs to come across in all facets, not just the school environment.  Sometimes the simplest thing can change the perspective of a parent who is struggling to see the light.....one positive step is a giant leap and means the world to people like me!

TTFN
Martha

TODAY IS......

Hi all....

Today is.......

EMOTIONAL!

It's World Autism Awareness day and my emotions are running high.  I guess it's because there are tons of stories on the news and on the internet.  Of course, I read them all.  It's just what I do.  But for me, today is emotional for many reasons.  For me, Autism is 365.  It's not something that ever goes away.

I want this month to be about building acceptance.  I feel like a cure is the last thing to worry about because Autism is not the same for every child.  I have said it before and I will say it again.....if you have met one kid with autism then you have met ONE KID with autism.  It's different for every child.

We have to build a culture of acceptance and understanding.  A kid with a tantrum may not be bad parenting.  It may be a child on sensory overload.....those are hard days, tough on everyone.  And you do all you can to help but it may take a while and what you do may not feel like enough.  It never does.

Don't let April be the only month you are aware.  They need your help and so do their families......For me, I would not have my kid any other way.  JB is so fun and loving.....but yes there are challenges.  And I will fight everyday to overcome those challenges because THAT is what love is!

TTFN,

Martha

IT TAKES PATIENCE!!!!!!

Hi all,

It's been awhile!!!!  I have had a little bit of a block....then I received some advice that writers just write.  So, that's what I have been doing......not by blog but in a journal and a common theme seems to come across lately!

PATIENCE

  

It's really hard to have patience.  Especially when every minute of the day requires you to be patient.  Bet many of you can say the same thing!!!!  Maybe I am too patient and that's why I take blood pressure meds....LOL!  But honestly, I feel like my only time to not deal with patience is when everyone goes to bed.  That's my moment to watch crazy TV shows or work, and in reality, that's when I work.  So there is no letting go....not completely!

I want to talk about patience and autism.  To deal with autism, you have to be patient.  Everything takes time......and truly it's not how you plan it to be.  Things we consider automatic, are not automatic for them.  For them, it's a series of steps.  Maybe a chain they must memorize.  Teaching that chain takes time.  And a step forward is sometimes 2 steps back.  You have to be patient to work through it and it's not always easy......because you have to wait!  Well, who has time for that???

Let me give you an example,  JB lacks self-help skills.  What does that mean?  It means, he doesn't feed himself, he doesn't dress himself, he doesn't brush his teeth or comb his hair......I do it.  Imagine a morning where you are making lunches for kids, getting clothes ready, taking care of your own personal needs and then having to do all those same personal care things for another.  It can get a little crazy (and he's 7)! And all these things, aren't quick.  For JB everything is a game or a bargain.  If you do this, then that.......sometimes just putting on socks can take 30 minutes.

 And it's not just that.  We are currently teaching JB about a time out from mommy.  I have to wear a bracelet to show him when I am available for him and when I am not.  From the time JB gets up to the time he goes to bed, he follows me around.  Kinda like a new puppy would.  I go get coffee and JB is literally right behind me, hiding under my robe.   I am in the shower and JB opens the shower door to hold random conversations with me.  I am cooking dinner and JB is into everything I do so as I cook I am cleaning up his mess.  These things are just a few examples of what our days are like.

Awwwwww patience! 

That word again.  But it's true, you have to have patience.  You have to breathe and let go.  And you have to have an outlet.  I often giggle about things with friends.  I started walking and getting up 15 minutes earlier to barely work out.  But it's something.  And I steal a tip from JB's book, I cope by breathing and centering myself.  Although I am not always my best me, I sure give 100% towards being my best me with a positive attitude!  Hmmmmmmmm.......writing that just made me realize that being positive holds so much power.  I spend a lot of time thinking, "We got this!"  I get up and keep going!  Because I love my children, I love my job, I love my husband (most of the time), and I am learning to love me.....me is not easy but that's an ongoing issue, self-confidence thing.  But I'll get that too!  Soon!

TTFN folks......and remember patience is a virtue!

Martha

Don't apologize!

Hi

I wrote in a past blog that if you met one child with autism, then truly you have met ONE child with autism.  You see, autism is different for every child.  Maybe that is why there is no cure at this point.  And then, maybe that's why we don't really know for sure what causes autism.  The brain works in mysterious ways!

There are many "theories" about what causes autism.  But in the grand scheme of things.....does that take away my guilt as a mother.  Yes....you heard me right.  Guilt.....I have spent 5 years asking why and how.....I have read reports and talked to doctors.  Was it vaccines?  I don't know......Was it the fact that I had the flu during my first trimester?.....I don't know.  Is there concrete evidence?....I don't know.  And I am not sure that I want to know......because it doesn't really matter.  I mean, autism is here and it sure the hell ain't going anywhere.

And, I have had many experiences with whether or not my child actually had autism.  In the beginning doctors said no, then they said yes.  Which is it?  He made no eye contact, he didn't answer to his name, he wasn't making his milestones.  But I was told that boys are slower in development and the thing is, I couldn't compare my son to my daughter really because she was speaking full sentences at 9 months old.  Yes....she has always been a talker, folks!  So what do you do?  You know something is wrong.....as a mom, you have that intuition.  And a friends' prodding only furthered my questions.  In reality,  I knew something was wrong.  So I kept asking questions.....I probably got super annoying but I had to!

Speeding up to the present.......I have an acquaintance that is just now getting her son a true diagnosis of autism.....he is 11.  11 folks......yes, 11!  And it took a serious incident that showed he was a danger to himself and others.  Here is what is heartbreaking, a mom was told that autistic kids don't show remorse so no way does her kid have autism.  Really?  That is heartbreaking my friends.

You see.....autistic kids are loving, smart, remorseful, aware, funny, happy, sad, angry, etc.....do you recognize those feelings within yourself?   I do.  I see these things in my kid....who is autistic.  Hearing this moms story for me was hurtful....because my kid is remorseful.  He always apologizes for his actions after having a behavior.....does that mean he is not autistic?  Absolutely not and I think that is one reason as to why we can't answer questions about autism.  Because one kid with autism is just one kid.....all brains work in different ways......I am happy my kid is remorseful.  It means he feels and thinks about his actions.  But really, I don't want him to apologize.  He can't help himself, he can't help how his brain sparks.......don't apologize! 

I will continue to repeat myself forever...that autism is a daily journey because it is.  My kid is autistic.  But autism is not who he is.  It's solely a piece of him.  My kid is everything I hope for him....he is funny, loving, adventurous......yes, we need help finding these pieces of him...he needs help expressing himself at the right time....but, the thing is that autism doesn't have him.  He has it!  My job is to get him the help he needs so he can function the way you and I do.

Getting that help is not always easy.  It is a fight for many parents.  It often takes months to get services and sometimes even years!  Doctors say early intervention is key........and it is.  So keep fighting parents.  Keep advocating because we are all they have......don't give in, don't give up.  Follow your heart and listen to your intuition.....keep asking questions.  You can do it!  It's not easy.....you don't always want to hear outcomes but you can do it.....your child needs you!

TTFN
Martha

The Struggle is Real....

Hi all,

Ya know......Autism is a journey.  Often we think about journeys in terms of time.  And I, personally, think that journeys happen over months and years....not daily.  But honestly, that is Autism my friends.  Autism is a daily journey and sometimes a daily struggle.

This past week was awful.  It made me struggle in many ways.  I wasn't effective as a mom, wife, person......at least that is how I felt.  JB had two really horrible meltdowns.  REALLY horrible.  Here is the thing.....with Autism, you sometimes have no idea what the root of the problem is because it's often something that cannot be communicated.  And the way it is communicated is through behavior.

SO..........

Wednesday, JB just could not get himself, keep himself, together.  During therapy, he simply screamed for me over and over.  I would try to help, then I became a target.  The target.  THE TARGET!!!!  What does that mean, you ask????  Well, JB screamed and cried.  He ran to be with me but then he would bite me, hit me, head butt me, kick me.......say very vulgar things to me.  Then, he would cry and want me to hug him, he would beg me to tell him why he was such a monster......Yes peeps, my 7 year old does these things....says these things.  It's almost this game my heart goes through......so strong and patient, then desperately wondering why and how I can help.    My heart hurts then rejuvenates.  And here is what people don't know, it's a cycle!  JB apologizes and says he doesn't mean to do the things he does.  Thinking it's all over....I engage and hug and comfort.  But it's the attention he seeks.  I should know better because it starts all over.  The hitting, kicking, the language, my broken heart.......this cycle goes on and on.  It can last for minutes.  It can last for hours.  It effects every aspect of life.

No wonder AP struggles.  During JB's meltdown, AP wanted help with homework.  I couldn't help her.  I couldn't.  Her response was to scream and slam her door.  Was to yell that JB gets all the attention.....all I could tell her was to not worry about her homework.  That I would email her teacher.  But for her, it was just another reason to hate Autism.  To blame Autism for the lack of attention she gets.....times like these make you feel lower than low.

Lower than low......

But then the next day comes....all is forgotten for JB.  And this angel arrives because that really is what JB is....yes, an angel.  He woke early on Thursday and asked to make his sister a PB & J sandwich.  He made her lunch, then his, then helped with mine.  It was a reminder, a very good reminder of who JB really is.  Who he really is.....it's not that I don't know, but the behaviors mess me up emotionally.  Screw me up........make me question myself and the world around me.....

If I feel this way, then what does my AP feel like?  Probably just like me......and just like me, she keeps quiet.  Because that is what I have taught her through example.  I keep quiet.  Thinking no one understands.....and yet my 10 year old daughter, is following my lead.  Geez,  momhood is hard...but so awesome because as hard as it can be...I also love the experiences I have with 2 great kids.  You see, people told me that my son would never talk, never hug or touch, never look me in the eye, not really amount to anything.......well, shit, guess what?  He does all that and more.  And I am so proud to be an Autism mom who can share my Autism life with others.....and I am working on being better.  Working on telling my friends more and more.....because my friends want to help.  I just have to let them.  And in doing that, AP will learn from me that friends can help.  See, sometimes all you need is a smile or a simple hello to get through the struggle.....because the struggle is real.  And I will make it!  AP will make it.  JB will make it!

TTFN

Martha

The True Meaning of Normal.......take 2

Hi Readers....

Welcome back to part 2 of my post from last week....I am following up because I had asked AP to make a list of what makes her normal and to write about what she thinks is great about her autistic brother, JB.  I think it's important to share her thoughts.  Especially because life with Autism is hard...I think I share a lot of the tough and not enough of the joy.

Autism is hard and it will always be a long journey.  But Autism is also amazing in many ways.  JB is smart, loving and extremely witty......his wittiness, come to find out, is something that AP absolutely admires.

We had our meeting and her list of things that are normal included:  1) school, 2) therapy (shocking because it disrupts our daily lives so much), 3) reading everyday, 4) love, 5) music.....that's as far as she got because to her those were the only things she could think of.  But, when it came to writing about how great her brother is.......the child wrote a three page essay on how cool he is.  And the biggest thing for her was his sense of humor!  She loves to hang with him and talk because he makes her laugh everyday.....She says that makes her feel good.  I then shared with her that JB's sense of humor was something that keeps me going and enlightens my day....he truly is funny!

He also is weird...AP and I both agreed to that.  For example, I freak out regularly because JB loves to make himself shake.  I always panic that he is having a seizure....but nope, it's just "a thing".  These days, I just tell him to knock it off....sometimes he listens and sometimes he doesn't.  But then, I also told AP that she is weird. She does this weird dance that includes smacking her own butt.  I also shared that I am weird......I mean, really, who isn't?  We all have a "weird" thing....Last post I shared that I am a huge Star Wars geek but guess what, I don't like my food to touch?  A long time friend, who will kill me, loves to eat a handful of fresh fallen snow......I also have a friend who hates to dress up but her nails are to die for....Everyone has something.  Those not normal things make us normal......AP needs to know that life is okay as long as you are doing the best you can.  And our not normal makes us normal...makes us who we are.

And although, Autism is a struggle, it makes JB who he is.  And who he is...well, he is a loving boy who is good hearted and super funny.  Those are the things that I told AP she cannot forget.  She needs to hang onto the things she loves because those are the things that make us happy.

Who cares about normal?  I don't.  Life is not normal.  I am not normal......and I don't want to be.  Because my wacky self makes me who I am.....love it or leave it!  AP has now promised to talk more and to also share when she needs a break.  Something we all need.....ya know, I forget a lot about myself because kids come first.  But I also forgot that AP may need some time as well....just to recharge.  My goal....stay abnormal and give breaks as often as I can. 

TTFN
Martha

The true meaning of normal.......

     Hi all,

     Today, I write really for my daughter.  A young lady who is struggling.  She has really been moody.  I mean, really MOODY.  She is ten and I am more than sure she is going through a lot of changes in many ways.  But recently, I have noticed more aggression than anything towards her brother.  Towards Autism. 

       AP screams at JB a lot anymore.  Especially when she is frustrated.   Recently, I witnessed  AP kicking JB after a game of hide-and-seek.  It was not gentle play.  At first, I was really mad but then my thoughts turned to why.

     When confronted, AP put on a sad face and tried to deny her actions.  So I asked her, "Do you want to talk about Autism?"  AP broke down and sobbed....she begged me not to ask her that question. The following interaction is true.....

"Mom, how can you ask me that?"

"Because I know it's not easy!  You have to get your feelings out!"

"I hate you!"

"You don't mean that!"

"I just want JB to be normal.  Like me!"

"Girl, what really is normal?"

Dr. Seuss said, "Why be normal, when you were born to stand out!"  

Maya Angelou said, "If you are always trying to be normal, you will never know how amazing you can be." 

     Things are not everyday normal in the Autism world.  But really, what is normal?  What we consider normal for ourselves could be considered completely abnormal to somebody else and vice versa.  For example: I am a huge Star Wars geek, I collect rock t-shirts, Minion trinkets, and Star Wars shirts.  I absolutely love anything Disney.  I have a collection of goodies by my desk area that make me look like a HUGE kid.  I love to sing songs but I make up my own words....Is that normal?????  Maybe, maybe not.  But it does make me....ME!  And I think I am pretty geeky awesome!  HA! HA!

     I guess that's just it. AP has to find a sense of normal that works for her.  She has to learn to accept and then deal with Autism in a way that is healthy and good for her.  We all have things in life we have to learn to handle but at 10, an Autistic brother is a lot.....of course, as her parent I need to help guide her, which we moms just seem to do automatically.....because we are moms and it's some built-in instinct thing.

    I have also challenged AP to write.  To write about what she thinks is normal and to write about what she finds great about her brother.  We, then, will have a meeting.....just to talk and to see where her ideas lead us.  "But it's more homework, mom!"  Yep, she's kinda right.  But it's a good start that will hopefully lead to good discussions!

TTFN

Martha

Demands and Pressure

Hey Readers....

Have you you ever felt like you have too many demands placed on you?  Every little thing is too much pressure???

Usually, I am pretty easy going or at least I try to be.  But sometimes my plate, my cup very much over flows!  Autism has been tough this week.  JB has had night terrors, screaming bloody murder at least once every night.  And also a huge potty mouth....JB has always had a potty mouth but this week has been awful.  It's embarrassing but in reality, it's just a word.  The "F" word but again, just a word.  And when it's used appropriately, how can you fault that?  For me, you can't.....you ignore it and laugh, or cry, about it in the shower!

My daughter has also been an issue this week.  Seeking my attention in ways that are really negative.  I am trying so hard to be patient.  She is going through so much......changing hormones, dealing with autism.  It's a lot to ask of a child.  This week she has done things and said things to purposely hurt me.  I work hard to make sure she is good.....I try to give her attention in subtle ways, it's not enough.  Sometimes that makes you feel like a failure.

My husband is dealing with things himself.  One of those things is fear that he CAN'T do it.  That he cannot handle the stress of autism.  But I give him a lot of credit because he has finally decided to see a doctor.....seeing that doctor has changed his attitude a bit, he is calmer and more tolerant.  It's a process to understand that things won't be what you imagined for yourself.  See, it's weird because even though you imagined life one way....doesn't mean that it won't be that way.  It's just different and there ain't anything wrong with different.

SO...let's get back to that thing about demands and pressure.  I am really good at hanging in there and staying positive.  I am really good at putting on a happy face.  I am pretty good at taking care of everybody, well, except myself.  And sometimes the simplest thing....makes me lose it!  This week it was a cancelled doctor's appointment.  I am trying to take care of myself......I want to.   Then this....it set me off.  It lit my fuse!  It's like I hold it all in then one tiny thing just really hits me and everything is a disaster or stresses me to the point that I cry and say things that make me seem weak!  Like I have no confidence.  Truth is, I don't....but I sure am good at faking it!  Ya know, a friend tweeted something that resonated with me.....she said that you cannot say yes to everything especially when you can't be effective.  It's not that I say yes....it's that I just do even when I can't.  Because my energy and stress level builds up, then the demands and pressures become too much to handle.  I have to find the happy medium and take time to make sure I am okay too.  But that leaves me with a burning question.....How do I do that?  My schedule, therapy not gonna change......How do I do that?

TTFN
Martha

How easy it is to forget!

Hi readers!

The New Year is upon us and many often reflect at this time......I actually wait to reflect until my birthday, which just so happens to be today (a week after the New Year).  My life is truly Autism.  It's wrapped up in all that I have to do and deal with.  Autism parents have tons on their plates.  Therapy, behaviors (that are sometimes extremely difficult and can last for hours), doctor's appointments......it's stressful because holding it together means losing it in other ways.  And then you have to think about siblings.....my poor daughter who says she is okay but in her face, I see pain....probably the same pain she sees in my face!  And that completely worries me.....

So what do I do about it?  Well maybe, I need to remember me.  A parent often puts themselves last on the list and when you have more to deal with, it's easy to just let yourself go.  It's easy to hide behind a smile or a new outfit or a new haircut......many often do this sort of thing because they just have to.  We all have our "thing"! But maybe that's the wrong way to go about things!

Today, I got to go out with my girlfriends......that's a really BIG deal.  I don't get to do that!  Leaving Autism is not easy.  Grandma and Grandpa cannot deal with the behaviors and being able to count on a sitter is hard because you don't trust just anybody.  What kid/teen can deal with Autism?  Then I have these wonderful friends who offer but, it's hard to let them because it really is a lot to ask.  Not sure they know what they are getting into and in my mind, I just cannot do that to them....and that's silly because things could be just fine! But the worry is there and that worry is also stressful. 

But today....oh, today!  Best. Day. Ever!!!!!  I had a sitter.....I went out with my girls and oh, we laughed and talked......we were girls hanging out!  I truly had forgotten how nice it was to just be me.  A me who deserves free time every once in awhile....a me who deserves to hang out with her girlfriends.....a me who deserves to be silly and say silly things.....I came home from my fun afternoon and honestly, it's all I can think about.  It's amazing how refreshed and good I feel.  Like I can take on Autism again.....maybe even the world!  What a great day!

In my world, it's easy to forget myself.  Then I have a day like today that reminds me how important these moments are.....remembering yourself, myself, is necessary and important.  I am better for me, for Autism, and everyone else.  So, for my birthday wish.....I hope to remember me.  It may only happen every once in a while but that's okay as long as I remember to "Just Do It"!

TTFN
Martha