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?

25 Days Left in Autism Awareness Month

So, I am going to try really, really hard to write at least a little each day about our personal experiences with autism on my blog for the next 25 days for Autism Awareness Month.  I know I missed the first five, but, better late than never, right?

April 2 was Autism Awareness Day.  We lit our house up with some blue bulbs for the Autism Speaks "Light It Up Blue" campaign in order to raise some awareness in our neighborhood.

And I dressed the kids up in blue...

 

 More to come...

My New Favorite Cookbook!

I have actually had a few things to blog about lately, but it's been a bit difficult for me to get around to it.  Unfortunately, I have this annoying bad back problem that just won't go away.  I have had ongoing back problems since I was pregnant with Evan, so... like seven years now.  I had a bad setback a couple of years ago, when I could not get out of bed for about a week, and ever since, my back has just never fully recovered.  I am like a 90 year old women, and the gray hairs don't help either.  I had a flair up a little over a week ago, when I had this "brilliant" idea that it would be ok to play some basketball with the women in our ward for a big multi-stake tournament.  Really,...not so brilliant.  I haven't played, like a "real" game, in over 10 years.  Yes, I feel like I am in good enough shape to play.  I have been training for a half-marathon, and have faithfully kept up my strength training program (for my back) for weeks now, but that just isn't the same as jerking around on the basketball court.  My back did not appreciate it, and I have been paying for it now for the last 9 days.  I had to take a week off of training, and I have had to do a lot of laying around.  Sitting is about the worst thing I can do, so, yeah, to make a very long and boring story short (and probably way more than you wanted or cared to know), that is why I have not blogged in a while.

Anyway...

I have been a fan of this food blog for about a year now.  It's called "Our Best Bites".  I'm sure a lot of you have already heard of it.  I love their blog and almost every recipe I have made from them has been wonderful.  So, I was super excited when they came out with a cookbook.  I ordered it immediately, and have been cooking from it left and right since I got it in the mail.  I YUV it!!!!  Great pics, explanations, tips, recipes,...etc.  I highly recommend it. 

So, I guess I am going to brag,... just a little.  Mostly because I am pretty dang proud of myself.  I made some homemade bread sticks from their cookbook last night.  I mean totally from scratch with yeast, and letting the dough rise twice and everything.  I have wanted to learn to make good made-from-scratch rolls and breads for a while, and I have attempted, with some ok results, but usually I am still left a little disappointed.  But, after last night, I feel pretty dang awesome.  My bread sticks were "off-the-hook"!

Really, they were oh so tasty! I served them with an Italian meatball soup recipe, that, yes, I also got from the "Our Best Bites" cookbook.  Yes, there was a lot of chaos going on around me while I was trying to make these, (Ben and Evan were about to cause me to jump off a bridge), but it was worth it.  It was... really. :]

Oh, and I have not forgotten.  April is "Autism Awareness" month.  I will be blogging about that soon.