Some News

So I know it's been a super long time since I have updated my blog.  I, honestly just lost any interest in keeping it up over the last part of the summer,... and now well, for those of you who are not on facebook and didn't see my post, I am pregnant!  I have felt so sick and horrible that I have hardly even been on my computer since the "all day" sickness set in.  So, I do hope to update soon when I start to feel a little better.

We are super excited to add one more little addition to our family.  Vanessa is ecstatic, and is crossing her fingers that it will be a little sister.  A little girl would be nice (it has been almost 10 years since I had Vanessa), but in the end, I just want a healthy little baby.  I am due in June.

Hopefully more to come soon.

An Outing for the Entire Family

So, this is from way back in April, but I wanted to post about it anyway.  Having a child with special needs, sometimes means not being able to do things that other families get to do.  We can't just take Evan anywhere for several reasons:

A.) He might have a meltdown caused by his anxiety from being in a public unfamiliar environment.
B.) If my husband is not with me, then there are precious few places I am willing to venture out alone with a two year old, and a child with special needs.
C.) Unfortunately, the stares and the comments made by a few ignorant people can at times really get to me and despite telling myself that it doesn't matter what a few ignorant people think, actually believing that can sometimes be a little more challenging.

On the flip side,...

Every once in a while, because we have a child with special needs, we get to do things that other people don't.  In April, because it was National Autism Awareness month, we got to go to The Living Planet Aquarium during after business hours for FREE, but that wasn't the best part; we ended up being the only family that showed up, so we had the entire place to ourselves!!!!  It was awesome!  Yes, sometimes we do get hooked up,... and the kids (including Evan) had an absolute blast!

Evan got to do his thing...

He especially loved the jellyfish...

 

And the rest of us had tons of fun too...

The stingrays were a favorite for everyone!

It really was an awesome night; no stress, no meltdowns, no having to leave early, nobody staring... And really the best part about it for me was the we got to go together (like the entire family).  Usually if we were to do anything like this, it would be Marty or I staying home with Evan while the other parent took out Vanessa and Ben, so yeah,... it was a pretty special night for all of us.

I have a nine year old!

Holy cow, this summer has been crazy busy so far!  I am seriously worn out, and ready for school to begin again.  Between the birthdays, baptisms,  parties on the weekends, and all of Vanessa's activities, and Evan's therapy during the summer, I have hardly had a chance to even breathe,... and the state of my house can vouch for that.

So I am super behind on updating my blog, and will try to do a little bit of a better job in the coming weeks (hopefully).

Today I am going back to May to dedicate this entry to my daughter.  She just turned 9 a month ago.  Yes, I am old enough to have a nine year old.  It's crazy.  Man, it really does seem like it was just yesterday, she was Ben's age, running around with her chubby cheeks, and hair in pig tails. 

Vanessa at her 2nd birthday

Time flies by way too fast...

I wish I could slow it down a little, or at lease push a pause button every once in a while.

Now she is a very active, sweet, beautiful little nine year old.  She is such an amazing big sister and daughter.

She has had to deal with a lot, having a brother just 14 1/2 months younger with autism.  She has missed out on many outings, activities, and other things that a family without a child with special needs gets to do.  I have had to tell her no a lot, wishing more than anything I could say yes.  She has to deal with the stresses of having a sibling with autism that a child her age shouldn't have to deal with; even though we try so hard to shield her from it.  She worries about Evan, watches over him, asks me questions like "Will I be able to get married when I get older, or will I need to take care of Evan?"   Evan has been by her side ever since she can remember.  She knows no different.  She has more patience, kindness, understanding, and unconditional love than I will probably ever have.  She helps me to be a better mother every day.

Ok,... so on to her actual party.  She really wanted to go to Jumpin' Jacks (a big indoor inflatable playground). 

She picked out what type of cupcakes she wanted. (Brownie cupcakes with white chocolate frosting with her two favorite colors)

and she got to invite her cousins and some friends...

 

I think they all had a good time.  Vanessa told me it was the best party she had ever had.  So, I guess it was  a success.

Happy Birthday little Yessa! (Ben's name for her) We love you sooooooo much!

Happy Easter (part 2)

I mostly just wanted to post these pics I took of the kids before they went to church on Easter Sunday.  Evan wasn't in the mood for pictures, so I had to settle for just Vanessa and Ben (which isn't really settling). :)









ahhhh,.... love these kids!

Happy Belated Easter!

So, I really wanted to get a few of these Easter pictures up, even if it is a little late.

Every year for Easter we go (kind of out in the middle of nowhere), and have a big outdoor cookout with all of Marty's extended family with lots of yummy food around a campfire, and then we end it with a huge Easter egg hunt for the kids.  This year was a little cold, and a lot muddy, but the kids had a blast, and in the end that's all that really matters, right?

Even Evan was really happy and pleasant the entire time we were there.

But, Ben... wow, he was really hard to contain. He wanted to run around everywhere! He especially wanted to keep hiking up "the mountain".

Ben's first real Easter egg hunt.  He had so much fun!

The site of the Easter egg hunt.

Evan thought he would help himself to some of Ben's candy...

Ummm, Ben wasn't too happy about that...

Anyway, the kids had a great time.  Vanessa was having so much fun with her cousins, I couldn't even get her to stop and pose for a picture. Oh well,...

They came home with lots of candy, and lots of mud! 

Thanks!

Unfortunately my idea of writing almost everyday for Autism Awareness Month has not worked out so far.  I mentioned in an earlier entry that I had re-injured my back playing basketball a few weeks ago.  Well, my back has gone from bad to worse, so sitting in front of the computer for long periods of time is the last thing I should be doing right now.  I would still love to get in one or two entries before the month is over, but I will just have to wait it out and rest my old back for now.  I am getting an MRI this Friday,... so maybe I will get some answers.

Anyway,...

Thanks so much for all the kind words and support!  It means a lot.  :]

Day 3: More Than Words

I feel the need to add a bit of a disclaimer here.  I am writing exclusively about my own personal journey with autism.  There is a saying in the autism world, "Once you have met one person with autism, you have met one person with autism."  Autism is a spectrum disorder, meaning, that there is an incredibly broad range of behaviors, symptoms, etc.

The National Institute of Health gives this definition:

"The pervasive developmental disorders, or autism spectrum disorders, range from a severe form, called autistic disorder, to a milder form, Asperger syndrome. If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called pervasive developmental disorder not otherwise specified (PDD-NOS). Other rare, very severe disorders that are included in the autism spectrum disorders are Rett syndrome and childhood disintegrative disorder."

If you would like to read more autism you can go here or here.

So, like I was saying, every person is very different.  My experiences do not necessarily reflect the experiences of other families who have a child with autism.

I just felt I needed to put that out there.  Ok, now I feel a little better.

Now, back to my personal experience...

In many cases, but certainly not all, kids who have been diagnosed with autism, started out developing typically in the first year or two of their life.  This was the case for us.  Evan's first year seemed pretty dang typical to me.  He hit all his milestones,... he was smiling, playing peekaboo games, playing with his toys appropriately, starting to babble, gesture, etc.  You could clearly see that he was here, with us, in our world.  All children have this undeniable light in their eyes.

But, it was only maybe a only a few months after these pictures were taken, that things really began to change.  He started to regress.  He stopped interacting with others, he stopped babbling, he stopped smiling, all social development pretty much halted.  He slowly began to drift into his own little world, separate from ours.  And my sweet happy little boy went from what you see above to the one you see below...

Still incredibly beautiful, sweet, handsome, but just very distant.  The look in his eyes changed.  It's not that the light wasn't there at all, it just seemed like it had been dimmed.

Now, I am not really going to delve into what I think brought about this change in him.  This would bring me to the extremely controversial subject of vaccines.  I am just not going to go there right now.  Maybe later...


Anyway,...  this all brings me to today.  As the years have passed, and Evan has spent hundreds of hours in therapy, special schools, etc., the light in Evan's eyes has reemerged.  He is not exactly the same kid he was in his first year of life.  Many would say that Evan is definitely on the more severe end of the spectrum and I would say I agree for the most part.  I know he will never be able to live on his own and that we will always have to take care of him in some way or another.

He is now 7, and still does not have any words.  I was told by many, "Oh, don't worry,... he will talk"  Well, as the years have gone by I have come to accept that Evan will probably never talk and I am ok with that.  It's not that I've given up, it's just that my perspective has changed a bit.  Don't get me wrong, words would be nice, especially during times when Evan is sick or upset and he can't tell me why.  It is during times like these when I miss the words the most, but words are definitely not essential to communication.

What inspired me to write this entry today was a conversation I had with my husband last night before bed.  We were talking about Evan, and how this week (unlike last week) was really good for him.  There was no crying, meltdowns, etc.  He was incredibly sweet and pleasant all week long.  I started thinking about the events that take place each morning before I send him off to school.   Right before he catches the bus, I kneel down in front of his face so I am at eye level with him, and help him zip up his jacket.  It is then, that Evan almost always looks right into my eyes, touches my face, and smiles.  As I was telling Marty about this, I suddenly realized I was getting really emotional (and honestly I don't get emotional very often).  I think it was because at that moment I realized that even though Evan can not say the words "I love you, Mom", he actually has been telling me with his actions almost every morning.  Sure, I would love for Evan to say the words "I love you, Mom".  What mother doesn't want to hear that from their child?  But, again I was looking past the mark, failing to see what was right in front of my face.

Evan is severely autistic in many ways, but socially,... I think he is way ahead of the pack.  Sure he doesn't talk, but don't we always say actions speak louder than words?  Well, in Evan's case there is no other alternative. I will take his way of expressing his love over words any day. :]

Day 2 : Stimming

Ok, so Evan has this funny little thing he does pretty much any chance he gets.  He LOVES and I mean LUVS to twist anything he can get his hands on such as cords, string, pieces of material, ANYTHING.  He developed this behavior about 3 or 4 years ago and has never looked back.  Many, but definitely not all, kids with autism have these behaviors known as "stimming". 

So what is "stimming" you might ask?  Well, I will tell you.   It's a a self-stimulatory behavior.  In a person with autism, this usually refers to some type of repetitive behavior such as, but not limited to, hand-flapping, rocking, spinning, repetition of words or phrases, or in Evan's case twisting.  He has other repetitive behaviors, but twisting is definitely his favorite.  It's funny because really, we all do are share of "stimming".  If you have ever tapped your pencil, bitten your nails, twirled you hair, etc., yes, you too have "stimmed".  Unfortunately, the world is a little more excepting of the way most people stim, as compared to how people with autism stim.  Like many of us who engage in  repetitive behaviors, people with autism usually do it to manage anxiety, fear, anger, or deal with any situation that may be overwhelming to them.  We all do that, don't we?  I guess at some point someone decided it was more acceptable to bite the nails off our dirty little fingers, but not flap our hands (which is definitely more sanitary).  And just so you know, I am not doggin' on all you nail-biters out there,... I have a certain 2-year-old in my family who just can't seem to get enough of those little nails of his.  I'm just sayin,'... really we are all not that different.

Back to Evan...

Oh, we love our sweet Evan, but his little twisting habit has definitely caused some annoyances in our home.  He has a tendency to get a little carried away and he does not discriminate whatsoever when it comes to picking out his next victim.

Needless to say we have had our share of ruined items in our house.  In order to protect him, and some of our things we have had to take some extra precautions.

We have had to hang all our cords to our blinds up high so he can't reach them.

This is actually the ceiling in his room.  We wanted to hang lights in his room, but did not want him to twist the cord up so we had our wonderful brother-in-law who is an electrician place an outlet on the ceiling along with moving his light switch up high so he can't turn it on in the middle of the night anymore.

We have also had to take down many of the curtains in our home because he has tried to twist those into knots and has ripped the rods out of our walls while doing so.

Of course it's difficult to keep everything out of his reach.  He has twisted up many of my clothing, (including some new sweaters I had just washed that were laying out to dry).  Yeah, he got a hold of those, twisted them into knots and dumped them in the toilet.)  Ahhh,.... it's a good thing he is so cute.

Yeah, we love the little guy despite the havoc he can create around here.  Even Vanessa has fallen victim to Evan's compulsion.

Yes, that is Evan trying to twist her hair.  He just can't help himself.  He has twisted my hair into knots before. 

As you can see he is having the time of his life.  Oh, Vanessa,... she puts up with a lot, but she is such a good sport!  Evan adores her!

In fact while I was writing this I discovered Evan upstairs,... and what do you think he was up to?

Just twisting away....

Yes, he got a hold of a cushion from one of our chairs.

He keeps us on our toes, that's for sure.  But despite all his little quirks, we love him like crazy anyway, even if he is driving us crazy while we are loving him!

I mean look at this face...

How could we not?