New Blog

Here it is!

http://yourhandsinmine.wordpress.com/

Work In Progress

I am working on creating a different blog .. one that is more than just about ASD .. more of a family life blog.  There's lots going on in our family and there will be much more for me to blog about.  It will probably be mostly about Eli and autism, but the sky is the limit!

Upcoming posts:
Eli's neuro appointment
Eli's meeting with his therapists to make changes to his plan to help him
The great room change and sleep
Autism: the dirty word
A family update

Not One Of My Finer Parenting Moments

Vera is amazing with Eli.  It's like it comes naturally to her.  She just works with him and rolls with the punches that are autism.  He adores her and she adores him.  I really appreciate how she is with him.  I am so proud of her.  At times I do find myself feeling a touch sad for her.  This is more than any kid should have to cope with.  She can't just play with her little brother.  It's more complicated than that.  But, I know that in the end she will be a stronger, more tolerant and compassionate person with a huge heart.  I trust in that. 

Wesley is not so amazing with Eli.  I don't in any way blame him.  Mostly I blame myself.  Maybe I haven't done enough to help him understand.  Maybe I expect too much of him.  Maybe I ask too much of him in moments of stress.  Maybe I haven't explained any of this to him in a way he can truly understand.  Maybe I don't let him be the kid he is and needs to be.  Maybe I ask too much of such a young guy.  I struggle with this often. 

Normal got thrown out the window a long time ago.  There is no normal.  Everyone has had to take on a little more than they would have other wise.  It isn't easy or fair for anyone in our family.  None of us asked for this, expected it or have a magical solution to help cope with it.  We have all had to grieve, adjust and learn and grow through this ... with much more to go. 

So sure it isn't fair.  Isn't fair to Eli that this world isn't made for him and he isn't made for it.  It isn't fair to the big kids that they have to adjust and adapt their ways to better suit their little brother who is often lost in the confusion that to him is the world we do just fine in and take for granted.  I've never questioned if it's fair for me or Dave.  That much doesn't even enter into the equation.  Fair or unfair doesn't matter when you're the mama.  You just do.

When we decided to have our littlest man we knew like any parent knows that having a child is a whole bunch of unknowns and it's all awesome and amazing and it is what it is.  We accepted this when we decided to conceive Eli.  Even if we didn't speak of it, we knew and we were cool with it.  So I am okay with it.  I always figured I could handle it all, whatever it was.  It isn't unfair for me.  I'm coping, I'm dealing and I am just doing what I can to help Eli be the best Eli he can be and to help to big kids accept and adjust. 

When Eli was diagnosed I immediately thought of him.  What does this mean for him?  Will he ever go to a regular school?  Will he have girlfriends?  Friendships? Will he go to college?  Will he get married?  Have kids?  Will he always live at home?  Is he going to be able to talk?  Will he be okay?  Will he feel secure?  Will he learn to adapt?  Is he going to feel emotions like we do?  Will he know we love him?  Will he ever look me in the eyes and not immediately look away?  I didn't even think of the older two kids.

And for that I'm the jerk.  I was so wrapped up in what this all meant for Eli that I forgot about them.  Since then I have taken a step back and I have thought of them and what this means for them.  We answer questions, no matter how difficult, and we talk about it whenever they want to.  We help them understand Eli and why he does what he does.  They take part in some of his therapies.  We include them in everything.  But today showed that it just isn't enough sometimes. 

Wes can be down right mean to Eli.  Today was one of those days.  And I found myself beyond frustrated with Wes.  Why can't he just understand?  Why doesn't he just get it?  Why can't he just help Eli?  Why does he have to be so difficult and make everything as challenging as possible for Eli.  It was a damn marker .. why did Wes freak out that Eli had a marker?  It was a marker!  Even if it was his marker, it was just a marker.  And yet Wes freaked out to the point that he was yelling and stomping and grabbing from Eli.  And Eli in turn couldn't handle the commotion and began to smash the marker into the marker board.  And so the marker got ruined and Wes lost it even further. 

So I told Wes he needed to listen.  And I said (this is where the awesome parenting comes into play, take notes...) "Wes, stop being a jerk to Eli.  He isn't normal.  He's different and he's never going to be normal.  There is no need to be a jerk."  And then tears started to fall and it hit me: Wes needs as much during all of this as Eli does.  Wes needs me to be tender and explain things, not snap at him and call him names.  And I tried to keep talking, but I couldn't.  I just sat there crying, while Wes looked all bewildered and quietly asked Dave, "Why is she crying?"  And Dave said, "Because she hurts.  Because none of this is easy."  And then we had a conversation about it all.  A hard conversation filled with many tears, but a good conversation that needed to happen. 

This isn't easy.  It isn't easy for any of us.  But I don't think it's supposed to be easy.  Life takes work.  And we'll make it, even if I call my kids jerk here and there.

Accomplishments

Eli was first evaluated by EI (early intervention) around 18 months.  I didn't have any expectations; it was all so new and I was so confused by many things.  When they did the assessment they talked to us about his strengths and they kept telling us that he had a an awesome baseline and that they felt he would thrive in services.  Reading the written report a week later was daunting.  Our little man scored really low in a few areas, one of the areas was language.  His language scores were really low at the 3 and 4 month range. 

We knew he wasn't talking.  We knew he wasn't even making his needs known.  And we knew he couldn't follow simple instructions.  But seeing it typed in bold on that paper?  Hard stuff.  After a small pity party (hey I'm allowed!) I picked myself up and got ready for the long but rewarding road ahead.  I knew he would make gains and I knew therapy was going to be a wonderful thing for him.  I had lots of hope and I hung my hat on that.

What I didn't know, what none of his therapists knew was how quickly he would pick things up.  Once he learned to sign more and saw that it got him what he wanted- it was all over.  He became a more signing maniac.  And then he learned that he could say it too and the parties we threw every time he said the word more delighted him to no end.  And from there it was slow at first, but once he caught on and started to pick things up he took off like wild fire. 

It's been a year since Eli started with EI and 6 months or so since he started with BB (Building Blocks, they are therapy providers that work with spectrum kids using the floor time model with tiny bits of ABA thrown in).  The change in him is amazing.  He can put his own shoes on.  He can verbalize pretty much anything.  There isn't a word he can't say.  He often echos and he does use some odd words at times and his sentences are usually wacky, but he clearly makes his needs known!  He lets us know if he's hungry.  He let's us know if he doesn't like what we are doing (diaper changes).  He asks for things! He can get something if you say "Eli can you get the x from y?"  He has thoughts and feelings and desires and he clearly states things for us now. 

Some of the stuff he says cracks us up.  Some of it we still don't understand, but if we don't understand him he usually keeps trying until we do.  He is a spit fire for sure.  His imagination has taken off too.  His pretend play is wonderful.  He is learning to change and adapt his play as needed or asked of him without become too upset. 

It is so nice to be able to know his needs and to help him.  It was all a guessing game for so long and that was hard on everyone.  He was getting frustrated and at times so were we.  I felt like I was letting him down.  He had needs and I wasn't meeting them.  But now things are much easier in that department. 

Eli was working with one of his therapists a couple of weeks ago and she said something silly and he looked at her (yay eye contact!) and said, "Are you shitting me?!"  Plain as day.  She looked at me as if to say, "Did he just say what I think he just said?" and as if he was making sure he was understood because she didn't respond to him right away he said it again.  We both tried not to chuckle.  His daddy says that on occasion, but always in jest and never TO Eli and heck never in the same room!  But this kid hears everything, stores everything for later and puts it to good use.

Eli is an amazing kid.  He has come a long way and I have no doubt that he will continue to grow and thrive.  I know he'll always be autistic (there was a time when I thought maybe he would out grow it or just be quirky or something), but I am so thankful for all of his strengths and all of the wonderful things that comprise this little boy of mine.  

That's My Girl!

Vera is a very vocal little girl.  She never misses an opportunity to share.  She is a great advocate for things she is passionate about.  She is one little girl who is always heard.  This serves her well.  She's diabetic and sometimes she has to fight to get what she needs.  People don't always understand the seriousness of a diabetic emergency and if she didn't say hey I need this and I need it now and I won't stop until I get it she would find herself at time to be in a world of hurt.

Vera has many passions and she just loves to share them with everyone.  She is well aware that her youngest brother is autistic.  She asks many questions, often.  And to be honest sometimes I find myself annoyed.  I don't always have the answers and sometimes the answers are bigger than she is and I am not always comfortable answering.  But always I try my best to be open and honest with the big kids.  If they have questions, they need answers.  So we roll with the punches.

Parent teacher conferences were this evening.  When I met with Vera's teacher the first thing she said was, "She's great as always."  And with her awesome report card I wasn't worried about her academics at all.  Sometimes though I worry about her in social situations.  She is a full year younger than her peers and because of diabetes she shoulders more responsibility than most kids.  She has always been my mini grown up, so I like to check in with her teacher to make sure she is thriving socially as well.  And she is always fine.  But I'm the mommy, it's my job to worry.

Her teacher shared a moment with me.  Vera is very excited about a fund raiser that Dave has set up that is happening in August ( http://www.facebook.com/elihopsforhope?sk=info ).  It isn't just about raising funds, it's about raising autism awareness.  Vera got up in front of her class and told them excitedly all about Eli Hops.  She told them that her youngest brother is on the spectrum and what that means for him and for our family.  Her teacher said she explained it all with grace and pride.  She told everyone the details of the Eli Hops event happening in August and hoped that everyone would come.  After Vera was done, a young man in her class raised his hand.  When the teacher called on him he said, "I have what her brother has.  Yeah.  Me too." 

The teacher explained that that was a very proud moment for her.  She struggles to help the spectrum kids in her classroom (it's an integrated room with 5-6 spectrum kids in it) be a part of the room and not be outcast by their peers because she really wishes to respect their privacy and their space and she encourages them and hopes that they will share when they are ready.  She said when he shared she tried to ask him questions but he just didn't feel he had the answered.  But it was like all the other kids just got it and no one has questioned him or seemed to think he's "weird" since.

Vera's attitude about autism is amazing.  She doesn't see it as a problem or a bad thing.  She talks about it in a positive light.  I think it's great that Vera is proud of Eli and that she is able to share with anyone and everyone AND that it helped someone else share and be more openly accepted.  It's a pretty cool thing; awareness and acceptance. 

The Seat Of My Pants is Gone

Typically I am okay with fly by the seat of your pants parenting, actually I prefer it most times.  My thoughts are that kids are ever changing beings, the situation at hand is always changing and I'm a big fan of learning from things as you go.  Parenting is not one size fits all.  It changes and is molded by experiences over time.  Of course the huge things don't change, certain offenses are never acceptable.  My basic parenting philosophy is always the same.  But all the little stuff in the middle is flexible.  I'm always eager to figure out a new or better way to teach my ever absorbing sponges, ahem, children. 

Stick to your guns.  This is a big one.  My kids, if they can get away with something once, they will continue to push to get away with it again and again and again.  So if I don't want to see that behavior, they aren't ever allowed to do it.  It's just easier that way.  And expectations made clear make for a more secure space for the kids.  It took me a long time to come to this one and to stick to it myself.  I always wanted to be the good guy and the friendly mommy.  But it just wasn't working!  So now, no means no.

Praise praise praise.  When kids feel confident and loved they are more apt to want to behave and gain that praise.  If the good never gets recognized the child feels unnoticed and will do ANYTHING to get noticed, even if it's in a negative light. 

Tell them what they CAN do instead of what they CAN'T do.  They're young, they don't know what to do instead.  So when I say no don't do that, what are they to do?  When left to their own devices my children ... well let's just say they're a creative bunch, these kids!  So if I say no, I try to also tell them what they can do.  Sometimes I avoid no all together and leave it for bigger situations.  Not everything has to be about correcting them.  If they're throwing the ball and it repeatedly ends up in the street, I can say no all I want and it might get through, but maybe what they need to hear instead is that they should stand in the yard so they are throwing the ball sideways across the yard and not directly to the street. 

Now that the older two kids are getting ... well older, it's become less simple and less clear cut.  We've added consequences to the table.  Certain things are not acceptable, ever, no matter what.  Hitting, disrespect, name calling, uncontrolled anger that is violent and could hurt someone, and choosing not to listen are the big things not to do around these parts.  It's been tricky finding a punishment that fits the crime.  It's different with each of them.  They all respond in different ways to different things.  For now I'm still flying by the seat of my pants and figuring this one out per incident.

Responsibility.  I know they're young, but responsibility has to start somewhere.  And it's fine for me if it starts simple.  This is a big big world we live in and they need many tools to navigate it on their own eventually.  I say it's never to early to start learning these tools, in age appropriate ways.  I've also noticed that when they help out, they feel a sense of accomplishment and they are happier overall.  And that usually means they are more likely to behave and more willing to just lend a hand because they want to. 

Overall I try to build my kids up.  I definitely play on the fact that they enjoy feeling good about themselves and accomplished.  They love to be good people and to feel good about themselves.  They generally like to help other people and pitch in.  They notice that making other people feel good makes them feel good.  And who doesn't like to feel good?

This was all fine and good and going just swimmingly ... until autism that is.  Now there is no seat of my pants and there is no plan, there is no outline of a plan even.  So if I can't just wing it and I can't fall back on a plan, what am I to do? Nothing I've done as a parent for the past 9 and half years has prepared me to parent a child with special needs.  I'm trying!  It's like learning a new language, but without a teacher, without a book. 

Basically I've been dumped off in Greece and told "go for it!" and I'm just hoping we all make it back home unscathed.  Of course I'm not sure we will ever make it back to our original home.  I'm pretty sure we're stuck in Greece and we will just need to build a new home. And over time I know this will become home and it will be like all of this hard stuff wasn't so hard after all.  But right now?  I'm lost in a new country and scared that I'm going to mess something up!

Eli doesn't respond to much of anything.  Telling him no seems to hold no meaning.  Or it makes him lose it entirely and he just breaks down sobbing.  Time outs? Laughable.  He doesn't get it.  Praising him doesn't seem to hold much weight either. 

Eli definitely likes to accomplish tasks.  Like physical things.  He loves to have jobs to do.  He just adores throwing things into the shopping cart (we've worked on this and thankfully now he is only throwing things we need and not random glass jars) and yelling "Yay! I did it!"  But that seems to be different for him than us just telling him good job or way to do. 

I can stick to my guns with Eli, and it is important, but I have to constantly stick to said gun.  It isn't that I keep the same expectation over and over and then he automatically gets it for the future.  No, I have to stick to every gun, always. Over and over.  There doesn't seem to be a carry over here.

Eli gets tons of praise all over the place.  He does enjoy praise, but again, it's situational, it lasts for the moment and doesn't seem to carry over.  And it's different for him than it is for the older kids.  I can't quite explain it, but it doesn't seem to impact him like it's always seemed to impact the older kids.

Eli doesn't recognize other people's emotions (or his own for that matter) and they don't seem to impact him at all.  He gets scared when people cry sometimes.  I think he is beginning to show somewhat of an understanding of emotions, but I can't tell if he truly comprehends it or if he is recognizing key things he's learned in therapy.  He certainly doesn't know what to make of any of it yet.  So helping him to feel good by helping others feel good is not happening. 

This world is largely unknown to Eli.  And the fact that everything is always changing and things are not always the same is very hard for him.  Sure we go shopping and the basic principle is always the same: we go in the car, we go into a store and we buy things and we go home.  But, we buy different things, we take a different path in the store, we run into different people and different sights and different sounds. 

When things are uncertain Eli feels the need to gain and maintain some control.  This usually comes in the form of Eli needing to lead the way.  As you can imagine this is no conducive to actually shopping.  But if Eli can't have this control he melts down.  With any other child I would ignore the melt down and keep on keeping on.  I would give it no attention.  Well this doesn't work with Eli.  A meltdown leads to much worse things for a spectrum kid. 

But to give in?  That doesn't make much sense either.  This goes against everything I've ever learned as a mommy!  If you give in then they learn well all I have to do is throw a fit and I get what I want.  But it doesn't quite work that way for Eli. When he's melting down he isn't in a good place.  He isn't melting down to get his way.  He's melting down because he is overwhelmed and not understanding the situation and because he just plain can't handle it.  But still, I hate to simply give in. 

For now we have been compromising ... we find some way to help him "earn" the give in. We use a lot of "first and then" and we let him know he can do what it is he wants to do (which is actually what he needs to do to feel okay in an unorganized environment) but first he needs to -insert whatever the situation calls for here- and then he can be the leader for a little bit.  So really we have given in, our shopping is put on hold and he gets what he wants needs.

I am learning to slow down, to have more patience and to have fewer crazy expectations.  It doesn't all have to be done "right" or even as it's always been done.  As long as it's gets done and no one has been hurt, it's a win these days.

Everything is different with Eli.  None of the "rules" seem to apply.  None of my 9 years of tools or tricks work!  I am relearning and rebuilding my arsenal.  I just hope that as I am learning I am not causing any sort of damage to my littlest guy.  I know everyone is benefiting here; I'm learning and growing and Eli is largely okay.  He needs me to learn and grow so I can be the best mommy I can be for him.  And I'm sure growing my patience is something the older kids will appreciate too!

Bob - The Bent Tail Cat

We recently adopted a couple of kittens.  We are now a three cat family.  I always swore I wouldn't be *that* lady.  You know, the one with all the cats.  The lady some people might call the crazy cat lady. But it happened.  And I love it.  I couldn't imagine life without these 3 furry loves.  And I can't picture Bob without his Marley or Marley without her Bob.  And I suspect Mo thinks those pesky kittens are not as bad as she would like me to think she thinks they are. 

When we adopted Bob, two weeks after adopting Marley, he was the last of the litter to go.  We got to the house and a woman and her daughter were marching out with the last orange tabby cat, all fluffy and cute.  We get inside the house and the people mama of the cats hands this white fluff ball to David.  He sure was a homely little thing.  Cute though.  And Dave (who is not a cat person) was in love.  The entire time we were there, Bob just sat on Dave's arm at his chest, loving the attention.  When most kittens are skittish, this little guy just enjoyed the attention.

As we were putting Bob into the carrier to make our way home, the people mama said, "Oh his tail is bent.  It's fine though, he was born that way, but you should know his tail is bent."  We said, "Oh, okay" and put our handsome (though homely) newest little guy into the carrier to drive home.  It was obvious she had expected us to say no thanks and hand the kitten back to her. Her expression when we casually told her it wasn't a big deal said it all.  How could we want the imperfect cat that she didn't want and that none of the other 6 or so people who had come to get kittens would want?

It's easy.  We all have bent tails of some kind.  We're a bent tail kind of family.  We embrace these differences and love not in spite of them but because of them and without letting the difference become the being.

Haunted

Before we knew (okay I always knew something was up, but we didn't know in a clinical way what was going on) for sure that Eli was different, we had a rough night with Eli.  As I held him and rocked him in my arms and hummed to him, he couldn't be calmed and he was so restless and upset, but I just talked to him said, "Please stay mama's baby boy forever."  Dave stopped me quickly and said, "Don't say that!"  I know he knew what I meant; I was cherishing those moments of my littlest guy in my arms all content to rely on me for his every need.  They grow up all to fast.  But as a parent the scary things loom in the back of your mind.  What if something happens to him and he doesn't grow up?  What if something happens and he remains in a baby state for the rest of his life?  What if ... what if ... what if?  Well if it happened then I wished it.  I did that.  And logically my wishing it doesn't make it so- wouldn't that be nice? I wish for world peace!

And now he we are.  No one can possibly know what the future holds for any person, especially a young child.  But it is more likely than not that Eli will always live at home.  He likely won't get married and have a family.  He will need us much as a young child needs their parents, for the rest of his life.  I am okay with this.  It is sad, it is hard, but I have come to a place where I have accepted Eli as he is and everything that means.  What I don't accept is .. I wished this.  I wished him to be a baby forever. 

Please stay mama's baby boy forever ... has haunted me since the day we were first told he is autistic. 

You Writing You Note?

At the end of his therapist sessions, 2 of his 4 therapists "write notes" as Eli calls it.  They give a quick summary of how the session went and what was worked on and sometimes what needs to be worked on.  I love and hate these notes.  When they're good, it's good.  When they aren't good, you guessed it, it isn't good.  It can be hard seeing my baby boy through the eyes of a therapist sometimes.  Sometimes they see accomplishments I didn't recognize, which I love.  I love knowing that he is accomplishing so much and gaining so much.  More often though they see the issues I see but prefer to pretend are figments of my imagination or are just me over thinking.

Today's "write notes" contained this:
"Mom as well as Gen and myself have noticed a decreased in engagement and a shorter attention span pair with an independent need to play solo ... Eli would become frustrated at times today so I would use a calm voice and try to re-direct Eli or give him a time limit.  Eli did not respond well to demands today so we kept it low key."  That's therapist speak for he's slipping in.

I have noticed that he is less engaged and try as I might I can't seem to get him to be engaged like he used to be.  He just simply prefers to play on his own.  He gets irritated to the point of rage sometimes if I try to interject myrself into his play.  Independent play is good!  But, what's bad is his lack of desire to engage.  Especially since he use to seem okay with it.  It's hard to see him in his own little world.  He doesn't need us like most kids.  He is perfectly content to just be him and be by himself.  This is a terrifying thing for a mom of an ASD kid. What if he gets stuck in and never comes out?  I can't even go there.

So sure, I noticed it, but at times I see things and the therapists don't and they assure me that it's probably just a phase or he's testing us as his parents.  Yeah, well, now everyone is seeing it.  So it must be bad.  We will have a pow wow with his service coordinator tomorrow morning to get her thoughts and work on an action plan.  I can't lose my little boy.  I can see him slipping and drifting away and I keep reaching out my arms to him, but he runs away.  It's conflicting; he is happy alone, he doesn't *need* people in a social way, but he needs this world whether he knows it or not, feels it or not. 

This world isn't built for him and he isn't built for it.  It's often like we all speak one language and he speaks and understands another.  We need to bridge that gap.

So when Eli said to his therapist today, "You writing you note?" I knew it was that time again.  Time to sign the paper that says "your kid is getting stuck in his own world and we need to help him to come out."  I don't like those notes.

Literally Speaking ...

I read somewhere that being on the spectrum can make a person quite literal.  I've wondered how we will manage that being some of the most sarcastic people I know.  It can be confusing to an autistic kid; sarcasm.  And yet sarcasm is a huge part of who I am.  I also use a lot of phrases and sayings that could have many other meanings, but you know, people just know those expressions... right.  So what's a sarcastic and expression using mama to do?! 

I probably shouldn't tell the shoe addicted kid on the spectrum that his shoes aren't broken in yet and that's why he has trouble slipping them on his feet.   It took 10 minutes to calm him and get him to stop sobbing, "My shoe breaking?  You breaked my shoe?!" It was all good after I showed him his intact shoe, got it on his foot and told him I was just kidding about the breaking in thing.

In cute literal moment: His therapist was working with him today with pretend play using duplo and duplo people.  She, speaking as the farmer, said to Eli's duplo guy, "See you later alligator!"  Eli replied with a puzzled look, his hands in the air and, "We don't have an alligator." In a voice that said he was sorry but there was no alligator to say goodbye to. 

I'm working on it.  At first I tried to explain what breaking in meant.  That got me some funny looks and more tears.  So then I just tried to repair the damage I did with those two simple words.  In the end he's okay and I know not to use that expression again!  I wonder though if it gets better?  Will he learn some of these expressions?  Will he figure out my sarcasm like the older two kids have?  Or will I accidentally hurt him with my words forever?  I guess only time will tell. 

His name is Eli

And he is the reason I started this blog.
He is awesome.
He is 2.
He is funny.
He is moody (wait, I already said he's two.)
He is spunky.
He is independent.
He is stubborn.
He is full of personality.
He is strong willed.
He is autistic.
He is my inspiration.
He is wonderful.
He is beyond adorable.
He is opinionated.
He is a picky eater.
He is a kid who needs more input.
He is a terrible sleeper.
He is intelligent.
He is amazing.
He is my third born.
He is all boy.
He is particular about his clothing.
He is fast.
He is clumsy.
He is a puzzle whiz.
He is a fan of wheels.
He is very talkative.
He is literal.
He is handsome.
He is inventive. 
He is my little guy.
He is full of love.
He is loved.