IS ANYTHING NORMAL????

Hello all,

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

You should know......

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

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

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

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

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

TTFN and Happy New Year
Martha

Today Was Golden

Hi all,

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

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

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

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

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

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

TTFN

Martha

A Day Without Autism

SO......

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

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

A day without Autism!!!

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

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

SO..... 

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

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

TTFN

Martha

  

Time to think......

Hi all,

Ya know......autism is an interesting character.  With the holidays right around the corner, I always love to reflect on time gone by and even time gone forward.  This time of year is extra stress.  It is for everyone but to a kid that likes routine, well, it's hard to stay in your routine when there is shopping, menus to plan, places to go, and people to see.  There is no drop everything and just go with autism!  JB likes people, he loves to go but it's always on his terms.  We never stay long as it becomes chaos!  I always wonder if people understand....

See, there is a lot we Autism parents go through daily.  And it starts at the beginning....the diagnosis and the whirlwind of things that get thrown at you to intervene.  And it's not just intervention, JB had a test to check his hearing and it wasn't just any test.  He had to be put to sleep..... There was an MRI to check the formation of his brain and his grey matter.....something to this day, I don't completely get.  Then a 24 hour EEG to check for seizure activity--super glad this was done as JB was diagnosed with epilepsy.  All of these tests occurred within the year he was diagnosed.....hence the whirlwind or maybe better yet, the tornado!

But the whirlwind isn't just about tests or therapy....it's also about everyday.  The way we ALL handle those 24 hours.  Our family is dynamic, one minute things are great and the next minute there are no Doritos--end of the world!  Going somewhere means packing up foods that I know JB will eat, toys he likes, and making sure someone is keeping track of time (because Autism does have a time limit)....there is this part of me that is always worried no matter what.  And I know families and friends understand.....but that is a worry too!  Just something that you think about when there is...time to think!

I think Autism has changed my life, not JB's.  He is simply who he is and I will always be learning about him because he is always teaching me something and blowing my mind.  It's not always okay that life is different but most of the time it is.  And that is because family is love.  What's important is togetherness and the joy that wraps you up.  So what if we can only stay for 30 minutes......that's all we may have.  And let it be.....

Have a great week everybody!
TTFN
Martha

Feeling Good (and I like it)!

Hi and welcome back!

This week I saw many positive events for JB that led to many positive feelings for me.  Ya know, when JB left Jump Start at age 3 (because that's when all kids leave the nest)....I was scared.  He became a part of the district.  He moved around a little bit as we tried to figure out the right place for him.....and that little tidbit has really been key towards JB's success.  He ended up in a blended preschool program and socially, we kept him there for 2 years.  But then transition time came.  We all made the decision to try mainstreaming.  He did okay but really was never truly successful....then first grade came.  Again daily behaviors popped up.....many I have shared previously in other posts.  But as a parent, my stomach was in knots everyday.  EVERY SINGLE DAY!  My husband and I waited for the phone to ring, waited to hear what a crap day it was.....it weighed on us like a ton of bricks.

And when there is that much stress, it is hard to hold yourself together.  Meetings were dreaded, emergency IEPs were called....and the news was never what you wanted to hear.  Sure, there were always positives but the elephant in the room was there.....no one was willing to say this is not working.  No one willing to say they didn't know how to help.....but then, one stood up and took a chance.  Came to see me, was personable....and we agreed.  Try something new, and we did!

It's been close to 30 days now at the new school.  And it was time for a follow up IEP about the new placement.  My internal stress-o-meter went up.  I was not looking forward to this at all just because the meetings have been intense.  I got to the school and sat in my car.  Told myself to just breathe.  Told myself to remember that things have been going well.  JB has not run away and behaviors have decreased significantly.  Does he still have outbursts? .....Hell yes!  Autism is autism.  The brain snaps.  But JB's behaviors have not been as severe and he has been able to "reset" himself!  Steps that are all in the right direction....

Soooooooo, how did it go you ask????  GREAT!!!!  It was the first time where I felt like my kid was in the right place for him.  They talked about him with a smile and commented on his sense of humor and timing for jokes.  In fact, the story of the day was how my kid got up in front of the entire school and sang the "Silent E" song!  My JB did that....my JB!!!  That's huge!  HUUUUUUUUGE!!!  And man, I am a proud mama! 

Now I will say that there were things discussed that are going to take some work.  But that's why he is where he is....and he will stay for the rest of the year.  Hopefully this will help him learn how to be a student.  And here is the thing.....I walked out of that meeting with a different feeling.  There was no dread or crushing blow.  There was just me, a happy mom who could not wait to get to the car and call her husband to share the positive feelings.  To let him know that we are all good!

That's sure a great feeling.  And I like it!

TTFN
Martha

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

Let them help!

Hey all,

Sorry for the delay.....two weeks since my last post.  Ugh!  I feel like there has been so much going on that I haven't been able to think straight when it comes to writing my blog.  And that's kinda when it hit me......I feel very alone in this autism world, not sure people understand me or even if they ever could.  Over the last 2 weeks, we have had an emergency IEP....2 suspensions due to behaviors.... a runner (yes, JB ran away from school 3 times)....and a sick JB.  All stories I could share but I want to focus on me and that feeling of ALONE!!!!!

Definition of alone: according to Google, "having no one else present, on one's own"

Why is it that I let that definition consume me?  Honestly, it does.  Do I do it to myself? I think so....I really think it's a pity party for me.  I am realizing that I need to put my big girl pants on because the only person who can change that feeling is me.  In the last 2 or 3 weeks, I have opened my eyes to the kindness and love that others have to offer, want to offer.....I want to be open to it!!!!

A friend, and colleague, said to me that my blog helps her feel closer to me........girl, thank you for that! A friend, also a colleague, offered advice and made sure to make time for me.  A friend, and colleague, shared ideas with me.  A friend often sends me the funniest images and always tells me how much she loves and cares about me.  Another friend, will just send me "xoxo's" because she knows it's needed!  How in the world is that ALONE??????  It's not!  So why????  Why do I let myself feel alone?

I guess the last thing I want to do is burden people with my problems.  I do not want to bring anyone down.  What's honestly funny about this is that I think most people feel this way or think this way.  But friends are friends no matter the problem.  We support and share with each other.  We try to understand each other.  For the first time in my 5 years with autism, I feel different.  I feel like I am learning to, well, let others.....I know that is weird but in this time, I am finally opening up.  I am finally letting others help me, listen to me.  Not because I want them to but because I understand that they WANT to.  THAT is a gift to a parent, and a gift to JB really.  Why?  Because I am being better to me and in being better to me, I am being better to my JB!!!

Autism is a tough life.  But taking it on with friends.....we all got this!

TTFN

Martha

It's Hard!

Writing this week is really hard.  I keep hearing that it will get easier and in some ways things do but at the same time, autism gets harder.  School, ugh......that's an entire beast within itself.  But at home, we are dealing with a lot too.  Not sure people would even believe.  But I am scared.  As JB gets older and stronger, there are new challenges.

I do not want to even relive this but at the same time, people need to know what we parents go through.  My son was playing a game that was inappropriate, I took it away and he kicked me in the face out of anger......I was so shocked by it I had to leave the house.  He kicked me, the person who loves and cares for him.  How do you cope with that?

I am swollen and have had a headache for three days!  But I forgive because I LOVE him and know that he cannot control his anger.  That his brain snaps.....I so wish that there was cure.  I wish JB could control himself......there are so many things I wish for.  I have spent three days crying.  Sobbing and asking why.  Is that helping me?  Absolutely not! I have to let go and forget.....because he has.  JB has no clue that he hurt me.  None! That's part of the disease......

So, I spent the morning shopping......buying fun stuff that's just for me.  Kinda like therapy!  Buyer's remorse will hit me but for now, YAY new clothes!

TTFN,
Martha

Hugs

Hi all,

So I could talk about our next steps with school but there is always time for that.  Sometimes other things come to mind and make me want to write.  Today....a sappy movie made me think about JB's beginnings!  Made me want to write.  Made me want to tell you about where this little guy started!

My husband and I were told that we may never be able to have kids.  That was my issue, thanks to endometriosis.  Endometriosis has since developed into adenomyosis (the cure being a hysterectomy and I am not quite ready to go there).  BUT, along came AP and 3 years later came JB.  Those two are special...we never thought they would be.

Pregnancy was not easy.  I went on three months of bed rest with my daughter and 2 months with JB.  Both times I had preeclampsia (dangerously high blood pressure).  But it was my pregnancy with JB that was the craziest.  20 weeks in, we were told he had Spina Bifida.  That started monthly ultrasounds and weekly stress tests.  The doctors all felt that he was doing well and decided that the readings were really about me versus baby.  Sure enough, they were right.  I ended up with preeclampsia and JB came 3 weeks early.

The night he was born, I had to go on anti-seizure medicine.  My blood pressure was so high.  I wasn't allowed any visitors and I could not even see JB.  That was tough, but the next morning I had my guy in my arms.  That day, they said he had a problem.  He was not urinating, so he went to another hospital that had a pediatric urologist.....I was not allowed to go as I was still dealing with blood pressure.  The ambulance drivers and nurses came to get my baby.  They put him in an incubator and off they went. It crushed me....CRUSHED ME!!!!!

I spent 5 days in the hospital and JB spent 6 at the other hospital.  Luckily, JB had positive news.  But my hubby was running between home and two hospitals.  Come to think about it, I guess that really was the start of his crazy schedule!  Poor guy!

Guess what?  After one week of silly business....I got to go home and I got to pick up my little guy.  The happiest day ever!  Since JB was diagnosed with autism, I think about the beginnings of his little life a lot.  This kid has been through so much since he was born....just so much.  I could get down...well, I do get down.  But JB always picks me right back up with his smile and adorable dimples.  And lately, it's all about...."Mama, come give me a hug!"  Who doesn't love a hug?

TTFN
Martha

Ch-ch-changes

Hey all.  Thanks so much for reading!  I took a break to talk about feelings last week.  I hope we all agree that it truly is okay to feel.  It's human nature.  But I do have to get back to my story.....

We were last at Jump Start and excited about JB's first word....butterfly......but at age 3, students must leave this wonderful preschool.  At 3, students enter the world of the school district.  I was initially very scared of this change.  Would he be cared for the way he was cared for at Jump Start?  But, the district came to my home to learn about JB and eventually his teacher came.  This was important to me.  It made me feel like they wanted to know JB. 

During this time, we were also finally getting ABA set in place.  ABA is such a different animal.  After testing, they determined that JB needed 25 hours of therapy.  This meant 12 hours of preschool and 25 more hours for therapy.  That's 37 hours a week of work for a 3 year old child.  I get early intervention, but I also know that kids need to be kids.  Because we didn't know any better, we went with it.  You want the best for your kid.  And you believe what you are told.  So JB went to school from 8:30-12:00, then had therapy from 3:00 to 7:00.  It once again left us with a crazy schedule.

I took JB to the bus, my hubby picked him up from school and took him to daycare on his lunch break.  He had to be off by 2:30 to get JB home for therapy.  I came home from my job as fast as I could so my man could go back to work.....that's when therapy took place.  It was insane.  Too insane. My husband and I got to a point where we really didn't know if we were coming or going!

This schedule went on for 2 years and eventually really cost my husband his job.  They couldn't work with our schedule anymore.....so, we spent 7 months on unemployment.  That's a whole different animal and story in itself.  One I will share when the time comes.  But for now it's about JB, so I will get back to that.

Between school and ABA, JB was struggling.  We were struggling to have a family life.  We started questioning things and asking when JB was going to be allowed to be a kid.  We knew therapy was important.  We knew we were seeing great changes....but at what cost?  We were asking a 3-4 year old to "work" really for almost 40 hours a week.  Once my husband lost his job, we really started thinking about what was happening.  For our family to survive, we had to take charge.  It's so easy to let the ABA tell you what to do because you don't know.  But, they work for us.   Not the other way around. It was then that we made a choice.....to cut hours.

I would like to say that I am happy this happened.  I am to some extent but....every year there was something more.  The question of how to get JB where he needs to be.  That question of schedule still came up.  I thought that when Kindergarten came around, all would get easier.  It only posed new questions and yes, new problems.

A story for another day.....
TTFN
Martha

Nothing More than a Feeling

Hi all,

I am taking a break from my story to talk about feelings.  I have been reading a lot of articles, interviews, blogs.....no one ever really talks about feelings.  Is it a taboo topic?  If I have a feeling, does it mean I am being selfish?

Feelings are normal.  And in this roller coaster ride with autism, feelings happen.  Everyday is different and it's not always easy.  I cried a lot when JB was first diagnosed.  In fact, I cried so much and stressed so much that my face completely broke out.  I started dressing up and wearing a lot more make up thinking that it would help me hide my angst.   Coworkers/friends were constantly asking how I was staying so positive.  What they didn't know was that I would come home, do my mom duties, then get in the shower and sob!  Truth be told, I still do this.  Just not everyday anymore!

I feel like life has changed so much in so many ways.  I have lost friends but also, I don't make an effort.  My life is work, getting to therapy, making sure my daughter is surviving.....and then dealing with my husband.  People think of autism as just bad behavior.  It's not.  I struggle taking JB places because I really cannot visit as I am so busy running around after JB or the house is overstimulating and JB can't handle it.  It can be tiring.....people don't understand. 

My husband, you ask?  When I say dealing with my husband, well, he is also dealing with autism in his own way.  He struggles with the idea that the future isn't what he thought it would be.  When JB is down, my husband is down.  When JB is happy, my husband is happy.  Who supports him?  I do!  I have to!  He deserves to be taken care of too!

I really think it's just how and when we decide to deal with what autism is.  In the beginning, my husband was my rock.  Now it's my turn for him.  Something I will say though, is that at times I feel like I have put up a wall.  Almost like I go numb....it's hard when your kid is screaming profanities at you, spitting on you, telling you that he hates you.  JB is just a baby really....only 6.  But when he tantrums, holy moly people!  At this point, my wall and numbness kicks in.  That doesn't happen for my man.....I am not saying it's not hard.  But I can't let it bug me, rule me.  Instead the aftermath rules me, a 6 year old who says he hates feeling this way.  That he hates breaking my heart.  That he can't stop himself.  That's the kick in the gut!

BUT it's not all sadness, folks.  JB has the best sense of humor and tells great jokes.  He plays well with his sister and loves being around her.  He also gives the best hugs!  And he is learning so fast....we really are a happy family with hiccups that happen along the way!  Who doesn't have hiccups?  I mean, that is life after all!  And you surround yourself with supports--family members, and friends (like BG, KM, and AJ--thanks gals for making sure I take care of myself!).  You count on them and talk with them so you don't get lost! And so you keep the laughter going!

Keep reading.  I'll be back in a few days!

TTFN
Martha

Jump Start and Butterflies

Hello all and welcome to blog #3,

Thanks to all of you for coming back and reading about my adventures.  I love being able to share my story, and what a story it is.

We last left off with JB in a full body cast.  After six LOOOOOOOOOOONG weeks, the cast was removed and we spent another week working on learning how to walk again.  Poor JB had lost so much muscle while in that cast.  He was like jello!  Between physical and occupational therapy sessions, we got him up and moving pretty quickly.  In fact, by the end of two weeks, you would never have known that JB had been in a cast.

At this time, JB went without ABA therapy and because we had to cancel assessments, our timeline with ABA therapy changed quite a bit.  But here is where Jump Start comes into play.  Jump Start is a very special preschool for children with autism.  The school offers supports that teach children everyday skills using techniques specifically designed for kids with autism.  They come to the home and visit families.  They assess skills and make goals.  JB had goals that fit his needs.  One of those goals was to teach him to use sign language to communicate.  He was making some sounds but to be honest, I never thought I would hear him say a word.

Taking JB to Jump Start was hard.  I took him to daycare, my husband came home from work and took JB to preschool.  He then went back to work.  On his lunch, he picked JB up from Jump Start and took him back to daycare.  I was in charge of pick up from daycare when my day was done!  It was a lot of back and forth.  Lucky for me, I was about to be on my own summer break and that gave a much needed break to my husband's crazy schedule.

I loved taking JB to school.  I loved watching him go into the classroom and start an activity.  It made me smile to see him participate.  And I saw so much progress, a real change.  More interaction....and then it happened.......

Butterflies!

The thrill of a lifetime, was sitting on my back porch and JB tracking something so simple and yet, so beautiful.  He followed a butterfly with his finger, pulled my arm and said, "Butterfly!"  I was so overjoyed.....I couldn't believe it.  I was jumping and crying and hugging my boy....that moment really gave me hope!  That was a beginning for JB....he started acquiring lots of language.  He had a voice and was using simple words.  And it all started with a butterfly.

Butterflies are beautiful.  But for me, they are a symbol of hope.  I love seeing a butterfly because it makes me think about that very special day.  JB's small, but HUGE, accomplishment.  The start of his voice....next time you see a butterfly, I hope it brings you a happy thought as well!  

Our time with Jump Start was just not long enough....at the age of 3, the kids move on!  But for us it was just a new journey.  A new school, a new schedule, and ABA therapy.  All things I am eager to to tell you about!  And trust me, it's a bumpy road....but it's my bumpy road and that's okay!

TTFN

Martha

2 weeks and all is a blur!

Hi all,

Welcome back for blog #2.  When I last left you, my son had been officially diagnosed with autism.  The two weeks that followed were somewhat of a blur!  Honestly, they were.  I fought so hard to find out what was wrong with JB, then he got a diagnosis and things became so fast-paced.  I was taking kids to daycare, going to work, answering calls and making appointments on every break, picking up kids, running to therapy, making dinner, getting kids in the bath, getting them to bed.......it was all just fast and crazy.

Within those two weeks,  I was able to get set up with an ABA (Applied Behavior Analysis) company and we got on a wait list for a very special school called JumpStart! Both of these things were exciting to say the least as I knew they would help.  I just didn't know how hard it would be....and we will talk about that soon because I have to share the.....

SETBACK!!!

It's important to remember that JB was only 2 years old at this time and two weeks after the diagnosis, JB had a freak accident.  He went to kick a ball.  He missed and his body twisted.  He went into a state of shock.  We took him to urgent care and they called an ambulance.  I, of course, rode with my little guy to the ER.  He was admitted instantly and given morphine.  JB had broken his femur!  

What a crazy experience that I will NEVER forget.  I remember the doctor coming in.  The nurse closing all the curtains in the room and shutting the door.  It was weird and my hubby wasn't there yet!  The doctor proceeded to talk to me about the injury saying that the femur is the hardest bone to break.  The doctor then started asking me about abuse.  I know it was his job!  I know that!  I get it, my dad was a police officer for 25 years....I get it, I got it!

But it so rocked my world.....I just started bawling, telling the doctor he was crazy for asking.  It TRULY was a freak accident!  The doctor then hugged me tight and expressed that he was just doing his job!  I know he was.....I am thankful that he cares that much about kids.....that he cared that much about my kid.

JB was then taken for casting.  He ended up in a full body cast!  I am not sure how my family survived those 6 weeks.  I had to change his diaper and rotate him every 4 hours.  All while taking care of a 5 year old and working full time.  Let me tell you, I cried a lot.....but you do what you have to in tough times.  And JB gave me strength.  I don't know how he did it, but he smiled the entire time.....yep, the entire time!  Cast and all, he was happy!  And that saved me!  That saved my husband....

We had wonderful people around us, who wanted to help.  They made us dinner.....made me cookies.....watched the kids so both my hubby and I could go to work.  It takes a village to raise a family and boy, I am thankful for my village!  It was a tough 6 weeks.  We survived and moved on to the next phase, ABA and JumpStart!  I cannot wait to share my next post as great things happened!  So please stay tuned!

TTFN

Martha

The beginning of Autism

Hi all,

This is my first post as a blogger.....I would love followers but to be honest, this is about an outlet for me.  My thought is that if I can help anyone through my experiences, YAY!!! because we all need help every now and then.

Before I begin, THANK YOU RP for encouraging me to do this.....without your help, I would not be  writing in this format.  I am so glad I am opening up.....you have no idea!

My life has been interesting to say the least.  Going along normally, went to college, got married, got a job, had kids (a girl, then a boy)......but when my boy turned 2, my world turned upside down. 

AUTISM

I knew something was wrong as my son was not making milestones. I had to fight.  I had to keep asking questions.  Autism was furthest from my mind......but I knew something was wrong.  One summer day, my bestie, said she thought JB had autism.  It really pissed me off!  I was seriously pissed at her and we did not talk for far too long.  But she was right.....I knew it in my heart!

He did not respond to his name, he did not make eye contact, no voice, no eating, no walking....just a baby who liked to breastfeed and be carried.....that's it, nothing more.  The one diagnosis we did get was low muscle tone, which led to therapy.  That was a start.  Then we also got a recommendation to our local regional center.  Through them, we hooked up with a psychologist......and after that, an assessment.......oh man, that assessment!  I will NEVER forget it......

December 30th, 2011.....My hubby and I were told.   That word again......that horrible word.  I bawled!  My husband bawled!  BUT through tears, I begged the Psych to just help us help JB.  That was my goal, right then and there.....

So this blog is my journey to right now....past and present....my life with autism.  As hard as it is, it has also been a wonderful gift.  JB would not be JB without it. AND I LOVE HIM......more than anyone will ever know!

I hope you will follow my blog....learn, live, cry, and laugh with me as I take you all with me through this journey.

TTFN (Ta Ta For Now)

Martha....an autism mom!