Response to a response

Last week I wrote a post, Henry Ford Hospital Diagnosis; I posted it here and on Tumblr where I also have a Favorite Monkey page.  A couple people reblogged my post on Tumblr, with the response that I was acting like Caleb's autism was a death sentence.  But then I realized that they are teenagers and they don't know what it is like to be a parent, so fuck what they think.

This blog is about how I feel.  And right now, yeah, there is a death of expectations in my life.

I have to mourn that Caleb will not be able to go through the same milestones that I expected him to.  When we have children, for the most part, we expect them to progress the way we did.  We imagine them having the same major life events that we did growing up.  When we learn that our kids aren't going to have that kind of journey, we worry that they are being robbed of something.

Now, there is this rise of people with autism who rally around the idea that autism is awesome, and I am glad that they feel so empowered.  But don't think for a second that I wouldn't wish Caleb's autism away.  I am doing everything I can every single day to make Caleb better, and if I am trying to make him "better," then obviously something about being autistic is undesirable.  That said, I never want Caleb to feel like he is undesirable.  He is the most amazing kid and I love him more than anything.  Can I love him without loving his autism?  I don't see why not for now.  Maybe when he is older and he isn't able to improve as much, his autism will be more about who he is.  But, for now, it isn't as attached to his persona. 

If you are able to keep a blog and tell me why you think having autism is awesome, then you aren't a person with severe autism, and you don't know what it is like to have severe autism, so you don't know if that is awesome or not.  Cause I am the one who sees my son struggling to communicate.  I am the one who sees Caleb getting frustrated with his lack of abilities to match the taste and ideas in his head.  I am the one who sees Caleb break down because I don't understand what he wants and he can't tell me.

So, yes, when you are 18, you know everything.
When you are a mom, you know nothing, but you feel everything.

Tough Morning, Fun Afternoon

Caleb had a bit of a rough time during group time at Early On today.  When they have music time, every child has to stay in a circle made up of moms - basically it is mom-bouncer time at the baby music club.  Caleb screamed and cried and had a fit.  His poor face turned bright red and he just was having a very bad time. 

I didn't know what to do because at home, I never have to put him in this situation.  I don't really have a gang of women show up at my house and put Caleb in a circle, shockingly enough.  So, I tried to calm him down, but honestly, I felt helpless.  I felt like I could see the other people judging me and my son.  I felt like a bad mother.  I felt like I was letting everyone down, especially Caleb.  It was embarrassing to me when the occupational therapist was able to calm Caleb down when I couldn't.  I am his mother - shouldn't this by my ability by blood?

Well, after a difficult morning, Caleb and I needed some shopping therapy.  We got some markers and stickers, as well as some necessary groceries and household products.  Later, when we got home, we had lunch and then we were off to art it up!

Today we made 3 new pieces.
(btw, I think the dinosaurs and kittens combination is kind of brilliant)

 

 Caleb likes to layer stickers upon stickers, which I can find to be frustrating since stickers aren't necessarily cheap, and covering them up with other stickers seems like a waste.  But I have to remind myself that this is his process, and the fact that he is layering stickers is not a waste, but rather a demonstration of how he thinks and creates.  Plus, we are having him use stickers to work on his fine motor skills; no matter where he places the stickers, he is still working on those skills.

I really enjoy doing art therapy with Caleb.  It fills me with joy to see him get so excited to create art, something that was much a part of my life for a long time.  This also gives me hope that even if Caleb will not be able to express himself verbally, he will be able to express himself artistically.

This evening I spent about an hour cutting images out of an old macro photography book.  Most of the images are close ups of nature, which means they are interesting but there isn't a lot of variation.  I tried to make a lot of different shapes and sizes, and hopefully tomorrow, Caleb will be interested in making a collage with a glue stick. 

Here's hoping!

Art fun

Today we tried to create some artwork - basically working on art therapy.  We worked with marker stampers (basically bingo stampers), crayons, and stickers.  The result was better than anything I could have imagined.  Caleb *loved* making pieces of artwork.  I tried transition to another activity several times, and each time Caleb demanded that we go back to the art table.  When I finally had to take a break from the art projects to feed the dogs, Caleb waited by the gate, impatiently waiting the entire time.

Here are the pieces he created before he his afternoon nap.

 

Then, after dinner, Caleb wanted to do MORE art!  So this time, Daddy got a turn.

Every little step we make is another step forward in our progress together.

I love my little buddy more than words can express and now that we have another activity that we can share together, we have another way to bound together.

Some very cool signs for the future.

Some very cool things happened today:

• Problem solving
• Caleb couldn't get his kindle to unlock; this is done by dragging the yellow bar across the screen in one swipe.  When, after multiple attempts, Caleb couldn't get the yellow bar to reach across to the other side of the screen, Caleb turned the kindle over and turned it off.  Caleb then turned the kindle back on and after 2 attempts was able to unlock his kindle.
• My interpretation of this behavior is that Caleb was problem solving.  He said to himself, "huh, this isn't working the way it should.  Let's try something else and then see if it has an effect on how I get the kindle to work."  Now, whether or not turning the kindle off and then back on had any real effect on the unlockability of the kindle isn't the issue.  It is that Caleb went through the process of trying to figure out how to solve his problem, and he solve his problem he did.
• Creative/Imaginative Play
• Caleb had a bottle of milk this morning.  While he was drinking his milk, he was also playing with a large Duplo elephant.  With his milk nearly gone, Caleb decided to share his milk with the elephant; he tipped the elephant over and started dabbing the milk into his mouth.  The dabbing process ensured that the milk flowed out of the bottle whereas  just putting the bottle up to the elephants mouth would not release a stream of milk.
• My interpretation is that Caleb was pretending that he was feeding the elephant.  By explicitly excising milk out of the bottle, we was guaranteeing that the elephant would be fed.  This tells me that his imaginative play was not an accident.
• Responding Well to Physical Affection
• Caleb freely gave puckered up kisses to both his Grandma and Grandpa.
• Caleb usually only gives me puckered up kisses.  The fact that he is starting to branch out and share his affection is monumental.  We can only hope that this is a pattern he repeats.

In reality, all of these are single instances, and in all possibility,  could remain as so.  BUT, for us, Caleb's family, it is a sign of what Caleb is capable of. 

Caleb is capable of beating autism.
Caleb is capable of having a normal life.
I just need to be strong enough to help him have it.

Oops, I did it again...

It happened again tonight.

He fell asleep in the middle of dinner.

Poor tired monkey!

Maybe now he will learn how important it is to take naps in the middle of the day.....

Dinner wasn't THAT bad...

The three of us are eating dinner when Albert gestures for me to look at Caleb.

That is when I see this:

 Yup.
Caleb is out, like a rock.

We gingerly swoop him up and carry him to bed.

It was nice to have such a funny moment in the day to remind us what an awesome little monkey our Caleb is.

Today was better than yesterday.
And tomorrow will be better than today.

Henry Ford Hospital Diagnosis

The official diagnosis is: severe autism.

That word, "severe."

Kind of knocks the wind out of me.

I mean, I was expecting "autism," don't get me wrong.

But, "severe?"

That is a whole other ball park.

Now I am wondering if I have to mourn a whole lot of hopes I have had for him.

• What if Caleb never talks?
• What if Caleb never wraps his arms around me and squeezes and really hugs me?
• What if Caleb never says, "I love you" to anyone?
• What if Caleb never makes a friend?
• What if Caleb never goes to a school dance?
• What if Caleb never gets to make bad decisions like a regular teenager?
• What if Caleb never gets crushed by a crush?
• What if Caleb never falls in love?
• What if Caleb never has sex?
• What if Caleb never experiences a mind-blowing orgasm?
• What if Caleb never gets to decide whether or not to start a family of his own?
• What if Caleb never gets to go to college?
• What if Caleb never drives a car?
• What if Caleb never holds a job?
• What if Caleb never has a career?
• What if Caleb never owns more than one suit?
• What if Caleb never dances with a girl?
• What if Caleb never pierces, tattoos, or dyes something in the form of rebellion?
• What if Caleb never moves out of our house?
• What if Caleb never manages his own finances?
• What if Caleb never lives up to his true potential because he is weighted down by this heavy blanket of autism?

 I have so many questions and so many fears.

And yes, some of them are selfish.  I will admit that I want to be able to go through all the exciting mother milestones that my mom got to go through.  Being a parent of a special needs child robs you of that, and I don't think I was prepared to hear that my son was going to need therapy through his middle school years.

I was definitely not prepared to hear "severe autism."

It will take sometime to breathe and accept this diagnosis.

But, as my sister told me, Caleb is still that same sweet boy, and the diagnosis didn't change him.  And while that is true, my hopes for his future have changed, and that is something that will heal in time.