Thursday, March 27, 2014

yay!

Caleb has been making awesome progress.

His Early On teacher told me today that she thinks that Henry Ford was wrong in their diagnosis and that Caleb's autism isn't severe.  She thinks that Caleb is very bright and learns very quickly, and that he will not need therapy throughout middle school as we were told.

I am over the moon.
Shine shine shine!

Tuesday, March 25, 2014

Better Times A Comin'

Every so often, I have to admit, I get a pang in my stomach and I close my eyes and wish to god that Caleb didn't have autism.  I wish that it all just goes away and my son is normal and he says my name and talks just fine and my life is just, well, normal.  These pains haven't yet gone away, and I don't know if they do, to be honest.  I do know that as we settle into our little routine, they are getting fewer and further in between.

I still get sad.  I still think, "we us?"  But then, I focus on the positives.

Like yesterday.  Caleb has been making so many of these wonderful images with paint, marker, and stickers, so we thought it would be great if he made one for his cousin, Benton.  (http://blessingsforbenton.blogspot.com/)  As Caleb was picking out My Little Pony stickers, I casually asked Caleb to pick out my favorite pony, Fluttershy - and then he did!  So then we quizzed him again to pick out Pinkie Pie, and he was able to again!  Finally, my husband asked Caleb to point to Twilight Sparkle, and Caleb picked out a friendship banner.  My husband admitted defeat, but when Caleb removed his finger from the banner, there was Twilight Sparkle on the left hand side of the banner.  He had done it again!

This wasn't just chance - this was real communication.  This meant that he has understood a lot more than we previously thought.  Just because he doesn't speak doesn't mean he doesn't know.

Then today in Early On class, he didn't scream and cry during singing circle.  It was amazing.  He was, dare I say it, the good kid.  Seriously.

We have only been at therapy for 3 months and already we are seeing such improvement.  I have so much faith in my little monkey.  I know it is so hard for Caleb; I see him working and trying so hard all the time.  I wish life weren't so difficult for my son.  Like I said, I wish I could make it all better for him.  But, now only he can make it better for himself; all I gotta do is remove every obstacle in his way.

Saturday, March 22, 2014

Sicky McSickerson

Well, my poor husband thought that he couldn't get sick from the baby.  Yup.  Could not happen.  Not if he held the baby close and kissed his face.  Not if he ate his discarded applesauce packets.  Not if he refused to touch anti-bacterial soap because it was unnecessary.  Well....  My husband got sick.  And not just kind of sick, but majorly sick.  Like, holy shit, you actually look green, sick.

The kind of sick that makes the air around you wilt.  Seriously.  The air around him wilted it was so foul.  It smelled like vomit and decayed flesh.

On the plus side, I got to take care of the baby, the dogs, and Caleb (see what I did there?) for 3.5 days straight!  On the fourth day, I passed out.  Kind of literally.

It was a good thing that my husband was doing better because tonight, the fourth night, I allowed myself to fall down, face-forward, on the guest bedroom mattress and pass out.  And I was out.  For like, an hour.  Until I woke up to my son screaming bloody murder and my husband saying, "don't worry, your mother will fix it!"  This had me worried.

Somehow my son was able to factory-reset the Kindle.  That boy is pretty damn smart.

So, now I am spending my evening redownloading all of his stupid (I mean lovely!  LOVELY!) apps while forcing my eyelids open. 

Btw, the next time my child is sick and my husband thinks he is invincible, I am just going to throw everything away before he can touch it and then bathe him in antibacterial gel.

Tuesday, March 18, 2014

Migraines?

My husband and I both get migraines which are bad enough that we have to be on preventatives and see a neurologist about once a month.  So, while expected that our child would probably suffer from migraines as well; what we didn't expect is how young our child would be when the migraines would start.

My husband and I believe that Caleb is already suffering from migraines.  It is hard to pinpoint what exactly makes us believe this, but it is a combination of things.   First of all, when he has what we perceive to be a migraine, he is very sensitive to sound and light, which are common reactions for a person having a migraine. Secondly, he gets clumsy, stumbling and dropping things.  Next, he is grumpy and irritable, and exhibits behavior that usually means he is in pain.  Add all of these things up and sprinkle in instances when he squints looking at the TV or cries because his kindle app is suddenly loud, and consider that children with autism are more likely to suffer from headaches in general, and we have concluded that Caleb probably gets migraines.  It is also meaningful that some of the migraine symptoms disappear after an administration of ibuprofen.

Now, to be honest, my husband and I could be totally off.  And I really hope we are.  I hope this is something else completely benign and Caleb is migraine free.  But, just in case, we have an appointment with a Pediatric Neurologist in early April.

Do you know how hard it is to find a Pediatric Neurologist?  In Michigan, there are only 4 medical organizations that have Pediatric Neurologists.  FOUR.  In the whole darn state.  At the University of Michigan, you need a reference from you Pediatrician saying that your child needs this appointment, and then depending on the severity of your needs (according to the judgement of the doctors) you can get an appointment anywhere between May and next January.

Yup, you read that right.  Next January.
So, basically, if we went with U of M, Caleb could possibly be having migraines until next January without any sort of medical intervention.

Um, no thanks.

Then, this other private organization required not only a reference from my pediatrician, but notes from her dictation as well, and her dictation had to state that Caleb needed to see a Pediatric Neurologist.  Well, actually, it was the doctors at Henry Ford Hospital who said that he should see someone.  So, that one was a no-go as well.

Finally, I called the Children's Hospital.  Not only did they not need a reference of any sort, they have a doctor right near me.  All they needed was my insurance information and I picked a day.  So easy I was confused.  Thank goodness for them.

So, today I think Caleb had another migraine.  I could tell when the ibuprofen wore off.  He is actually sleeping during nap time, and sleeping a lot.  This is something that he inherited, and quite possibly from me.  I gave him this. 

More guilt.
Throw it on the pile.

My poor lil' monkey...

Saturday, March 15, 2014

I heard that you like stickers to stick on your stickers with your stickers.

Caleb has been loving his art therapy.  Every chance he gets, he has been pulling me or my husband back to his art station, begging for us to supply him with more paper, more crayons, more paint stampers, and especially more stickers!  This boy is sticker crazy!

Caleb was sick on Thursday and Friday, throwing up from illness for the first time in his life.  And even with a bad fever and stomach pains, he still wanted to make art.  Of course, he was super grumpy, and a super sticker snob.  He would thumb through our piles of stickers, angry that he couldn't find that one perfect page of stickers.

We finally got his room looking the way we want it to:

 

And now his walls are covered with his artwork, which is awesome.  We want him to feel a sense of pride in his work, and the best way we can think to do that is to proudly display it.  If he keeps up at this pace, by Fall his walls will be wallpapered with his drawings.  Now wouldn't that be fantastic?



His work lately is mostly with stickers, but we are trying to encourage him to use the paint stampers and the crayons.  I even tried to get him to do some collage work with photographs I cut out of an old photography book; true to his stubborn nature, he would always go right back to what he likes: stickers.

I think that his sticker work is good for him.  Not only does it let him express himself, but it helps build fine motor skills and learn to focus on a task for an extended period of time. His pieces are intriguing and I do appreciate some of the artistic choices he makes in terms of composition, design, and color work.  I just wish that he would expand his taste in materials. 

But, baby steps.

He will get there.  Eventually.  :)

Wednesday, March 12, 2014

More Children

It is the time when a lot of my friends are announcing on Facebook that they are having their second child.  This, of course, kills me.  I am insanely jealous.  So much, it hurts.

I want to have another child so badly.

I have been researching adoption.  It seems that through foster adoption, the cost is minimal, but the children all have emotional, social, or learning disabilities.  Otherwise, adopting babies inside the U.S. starts to run into the tens of thousands of dollars.  With international adoption, the fee can be around $30,000. 

My heart hurts with the idea that we will never have another child.  I know my husband wants more, and since it is my infertility that is stopping us from having more, I also feel completely guilty. 

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.

Tuesday, March 11, 2014

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!

Monday, March 10, 2014

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.

Sunday, March 9, 2014

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.

Friday, March 7, 2014

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.....


Thursday, March 6, 2014

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.

Wednesday, March 5, 2014

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.

Tuesday, March 4, 2014

Silly Evil-Eye-Giving Monkey!

And here is Caleb giving me the evil eye for bothering him while he gets his nighttime milk.

How dare I!!!


Big Day Tomorrow

Tomorrow is Caleb's big appointment at Henry Ford Hospital.  This is the autism evaluation that will decide whether or not our insurance sees him as autistic or not.  This evaluation will determine what kind of services Caleb qualifies for right now and in the future.  This evaluation decides whether or not Caleb gets to start the ABA (Applied Behavior Analysis) program at The Kaufman Center.

So, a lot is riding on this evaluation, if you couldn't tell.

My stomach is all up in knots, and I am nervous as hell.  I mean, this is it.  The real deal. 

Do I really want my sweet boy to have the real diagnosis?  I mean, so far, it has just been what his therapy evaluators have suggested and what we have used to describe him.  But, a hospital diagnosis?  That is like, for real.  Like, FOR REAL, for real.

But, if he does get the autism diagnosis, insurance will cover all sorts of awesome therapy, and Caleb will get the help he needs!

However, if they don't think Caleb is autistic, maybe he isn't really as bad as we all thought.

Maybe he is just having a bad year and we are all just over-reacting.  Like, maybe tomorrow he will wake up and be like, "my bad, mom.  I was just screwing with you."

I know that is a stretch, but one must always have an open mind to all possibilities.

I know that we are all hoping for an autism diagnosis.  I totally get that, really I do.  But more than anything, I am hoping to rewind to the point before he started missing milestones, maybe around 10 months, and give him a do-over.  Wave a magical wand and give him a mystical boost so that none of this has ever happened and my monkey would be able to tell me that he loves me or hug me by actually wrapping his arms around me and squeezing.  That is what I really want.

What is it going to take to make that happen?

Sunday, March 2, 2014

The Right Choice

My blog entries have gotten less frequent, and that is not only because our lives have gotten busier (therapy at the center and home), but because Caleb's behavior isn't as odd to us as it used to be.  I guess we are starting to get used to the idea of having an autistic child.

About a week ago, when Caleb was sitting in the middle of a pile of Duplos and started spinning around, I timed for how long he would spin.  He spun around for a full minute.  Six months ago, this is something that would have made me twitch and cry - it definitely would have made my facebook post.  These days, I didn't even think of it until nearly a week later when I am trying to come up with examples as to how Caleb's behavior doesn't faze me like it used it.

That doesn't mean there aren't the breakout behaviors that cause me to write blog entries, such as the freezer incident that happened last week.  I am just saying that overall, I am getting more used to the general behavior of an autistic child.

As we are speaking, it is 9pm, and Caleb is jumping around in his crib.  Last night, he was up until 11pm and then this morning he woke up at 7:30am.  That is not nearly enough sleep for him.  Six months ago this would drive me up the wall.  Six months ago I would have tried to control the situation.  Now I know that I cannot; somethings are just beyond my control.

There are things that I still worry about.  This weekend, Caleb didn't really spend a whole lot of time interacting with my husband and me.  He wanted to play on his Kindle the entire time.  I don't want to let him play on his Kindle, but then again, I feel like if he makes the effort to communicate to me that he wants his Kindle, he should be rewarded with his Kindle. 

James Paul Gee is a famous author and researcher who has written a lot of books on how children and adults learn from playing digital games (i.e. on the computer or console).  It is the idea that one can learn rules, cause and effect, delayed gratification and exploration in addition to the intended lessons of a game.  So, I figure that educational games must have some positive effect on Caleb.

That said, the research population didn't include autistic children or any children with special needs.  I need to weigh the possible benefits of digital play against Caleb interacting with passive toys - or, maybe even, *gasp* with me. 

No matter what is going on with Caleb, or the past six months, there has been one consistency.  I always have been and always will go to bed feeling like a bad mother.  I will always go to bed feeling like I failed the day and failed my son.  I could have done better.  I could have done more for him.  So, no matter what choice I make about toys or bedtimes, it will never be the absolute right one, because no choice is absolutely right.

Maybe one day I will feel like I have done enough.

But for now, I will go to bed with the same thought as always.

I am a bad mom.