New Photography Series

I have been working on a new photography series that looks at both the darkness and the light of Caleb's autism. 

So far I have 9 pictures. 
Here are 2 just to give you an idea of what I am doing. 
Let me know what you think.

Caleb's No Good, Very Bad Day.

Yesterday was a disaster.

And by disaster, I don’t mean that Caleb was a bit cranky and that sucked for like, 15 minutes.  I mean that Caleb was a complete and fucking disaster for the whole fucking day, leaving me in tears, threatening to slit my wrists if this is a sign of my life to come.  All I could to do was make some yummy thai food for dinner, shove some major migraine meds up my butt, and cry on the phone to my mom.  And then I passed out at 9:30.

It all started at occupational therapy.  I guess Caleb was not cooperating very well because he emerged from the hallway wearing a compression vest.  I got a bit of a lecture from Mr. Jason about not letting Caleb run the show.  Caleb will collapse to the ground in a pool of Jello when he is redirected to do something he doesn’t want to do; the compression vest is supposed to, among other things, inhibit this Jello-collapse.  From what I saw, all it did was severely piss him off.  

After his therapies, we ran a few errands, and he was okay.  He was whiney, but I kept him fully supplied in pretzels.  In his mind I am the Pretzel Queen.  I am rolling in pretzels.

However, when we got home, shit was storming. 

• I tried to feed him; he threw the food on the floor.
• I tried to use my computer; he started banging his doll’s ceramic head against my computer’s keyboard and screen.
• I took away said offensive doll; Caleb screamed and cried and screamed and cried.  And screamed.
•  I tried to use my computer on the fireplace mantle; Caleb pushed and hit me, trying to move me and get my attention.
• I tried to give Caleb attention; he stormed away from me and ignored me.
• A new toy came in the mail; Caleb recognized it from his speech/language therapy.  I tried to go put batteries in it so we could play with it; Caleb climbed up on the table, squatted down with his fist clenched and screamed. And screamed.  And screamed.
• When I did get the new toy working, Caleb did play with it nicely for a bit.  Then all of a sudden he got frustrated.  He threw a toy coffee pot at my shin.  That kind of sucked.
• He then kicked me.
• He then threw his new toy so hard all the pieces went flying and came apart.
• When I tried to look at him to tell him we don’t hit, he shoved my face away.

These are just specific examples I am picking out of an overall shitty day that included him also biting me, shoving me, and being a defiant at every moment. 

Now, don’t get me wrong.  I understand that no matter how bad my day was, his day was worse.  And I do have compassion for my little guy.  I recently posted a pic that stated, “No, my child isn’t giving me a rough time, my child is HAVING a rough time.”  And yes, that is something I have to remember.  That isn’t about me – my son is the one who is having a hard time adjusting to his emotions.  His explosions are not about me, they are about him.

At the same time, it is a good thing that my son is adorable.  Seriously.

Darkness and Light

 Today my best friend, Audrey, came over with her son, Damien.  Caleb and Damien have always gotten along so well; they were due 2 days apart, so being close in age helped them have developmental commonalities. 

This time, watching my son play with Damien was a bit heartbreaking.  Caleb was horribly rude, constantly taking toys out of Damien's hands; Caleb had no understanding of Damien as a person who has feelings.  Caleb was self-centered and selfish; he wanted what he wanted, and he wanted it right then.  I didn't realize how demanding Caleb was until I compared him to Damien. 

Don't get me wrong.  2 year olds in general are a handful, and I get that 2 year olds do not comprehend the concept of sharing.  I don't expect that of my child.  But Caleb wasn't acting like the boy he used to - I guess that is the point I keep on coming back to.

My child is changing.

I see it everyday in every little thing he does.  And I want to stop it.  I want to call a "time out," put a plug in the sinking sand, or something.

Audrey was very kind about how my son was acting.  She is very understanding and since she has a brother with similar symptoms (but different circumstance), she is able to relate.  At the same time, I felt responsible when her son melted down because Caleb stole Buzz Lightyear for the zillionth time.  Should I really discipline an autistic 2 year old who won't understand what I am saying anyway?

But where there is darkness, there is also light.

Recently, my son has learned how to make fishy faces and he has started to actually kiss people.  Today Damien and Caleb shared a sweet embrace and kiss.  It was quite lovely.  Maybe Caleb will be bi, cause honestly, there were sparks in that kiss, I swear.  :)

Caleb has also practiced making fishy faces with daddy.  Last night, Caleb spent 20 minutes sitting on daddy's lap, touching his face, sharing fishy faces, and giggling.  These are the good nights.  These are the nights that make me realize that even though my son is changing, he will always be my son; he will always be sweet, loving, silly, and a damn good kisser.

Runaway Train

The occupational therapist wasn't able to make it into the office in time for Caleb's appointment today, so Caleb had to play around in the office waiting room for half an hour.  We had to wait because his speech and language therapy is after his OT, so we to stick around. 

Poor Caleb had the hardest time.

He really wanted to stay interested in the toys, but there weren't enough toys there, as he can only really give each toy about a minute or two of play, max, before he needs to move onto the next one.  He exhausted all the toys within 15 minutes.  That is when he started running around.

This wouldn't have been so bad if the waiting room were enclosed.  But, it isn't.  Instead, Caleb can run out of the waiting corner and down the hall to the offices.  And then, he will bolt into the open offices and start playing with those toys.

So, there is me, running after a 2 year old who is bolting down the hall, giggling his ass off cause this is the most AWESOME game ever.  And since this game rocks so damn bad, he is going to do this again.  And again.  And again.

And if I try to walk him back to the waiting room, suddenly my son has no bones!  How did that happen?  My son is made of Jello!  Crazy Sauce!

By the time the speech therapist showed up, Caleb was already a hot fucking mess.  Watching him through the one-way mirror was like watching your child fail a test.  over and over again.

It wasn't pretty.

The speech therapist was so sweet about it, pointing out the few good things that my child did well.  My poor little dude.  Even now he is a disaster.  But, he just called for me, saying, "mom, mom."  Which means I need to attend to my sweat pea, hot mess or not.

Genuis Bar At Home

Today we cleaned Caleb's Leapfrog laptop.  We were kind of like the Apple Genius Bar except:

A) We are actually geniuses.  (which is proven by our ability to lose 3 pairs of glasses in 1 day)

B)  The keys were sticking because of juice in the laptop instead of bodily fluids.

Animals Are Yummy!

Caleb is enjoying playing with his jungle/savanna animals. 

He likes to investigate their parts, line them up, and of course, chew on their heads.

He likes to move it, move it

Caleb was watching the "I like to move it move it" music video (from Madagascar) and he started doing pelvic thrusts.

Ah, they learn the important stuff so young, don't they?

Fresh Air

Last night Caleb made this surfing polar bear and then proceeded to have it surf all over daddy's body. 

Daddy was an incredibly good sport about the polar bear getting a little bit fresh...

Rear View Window

 

Caleb used to spend a lot of time sitting on the back of the couch, looking out the window.  He loved to look at the world going by.  Every swaying tree branch, every running squirrel held some fascination for him.  I would join him in gazing out into the world, sharing the experience of loving the simple yet complex pleasures of a front yard.

That was months ago. 

Caleb hasn't climbed onto the back of the couch like he used to.  His awesome climbing skills are now less than average and he doesn't have the body awareness to balance himself on the back of the couch.

Today was the first day since the summer that Caleb has gazed out the window.  I was lucky I had my camera ready and luckier even still that the only shot I got off was a keeper.  As soon as the camera clicked, Caleb lost interest in the great outdoors, jumped off the couch, and started playing with a small plastic animal.

Sometimes it just hits me how much Caleb has changed.

I never thought I would get so emotional about my son looking out the window...

Flying Applesauce Monster

This morning we did some sensory therapy work with applesauce.  I tried applesauce because I figured that the white bean and potato we tried before was too thin a texture, and that is why it splattered everywhere.  I was hoping that a chunkier texture wouldn't get as much air

I put a dollop of applesauce on Caleb's tray and waited to see what kind of disaster would ensue...

At first he hesitantly touched it.  He would dip a finger or two in the applesauce and then drag it around the tray, kind of painting with the applesauce.

Then he started flailing his arms; he would pick up mounds of applesauce and fling it all over the dining room.

Finally he started hitting himself in the head (not too hard) and rubbing the applesauce into his hair.

 

That is when we called it quits and took a bath...

Btw, for the next month we are going to play the game, "who can find the flung chunks of applesauce hidden around the house."

I am hoping the dogs win.

Righteous Rice Bin

We work on our sensory therapy today!  Woot woot!  This afternoon we spent time playing in the rice pool.  Well, really it is a rice bin.  A fairly small and manageable rice bin, but hey, it fits the bill.  It was our first time doing it at home, and just like at OT, Caleb enjoyed picking up handfuls of rice and dumping them on the floor.  The only difference is that here, I have to clean it up.  Man, that part sucks!

Caleb did really, really well.  I was so proud of my little monkey.  While he started off only throwing the rice out of the bin, he eventually started submerging his hands in the rice, feeling it.  He didn't submerge his hands often or for very long, but he did it, and that is a big step.  He also wanted to be in the rice bin, which I think is cool.  Overall, awesome job!

He played in the rice bin for about 15 minutes; I then had to determine that rice time was over because frankly, I was tired of constantly picking up mounds of rice off the floor.  Plus, it was getting close to Caleb's nap time, and that is a break that we both need.

I don't know why Caleb always looks like he has a cold when he is in a picture.  Awww, my little mouth-breather!  My monkey is so cute in person, but honestly, he kinda takes crap photos...

Super Duper Snuggles

Last night, a tired Caleb gave daddy some sweet cuddles while we watched our nightly videos on the television.  It is not that we want Caleb to be so tired and pathetic, but then again, that is when he snuggles up next to us, soooo....  it is a conflicted emotion...  :)

Mr. Sillypants and the Awesome OT

So, the Farmington Schools Evaluation...
.
 It didn't quite go the way I expected.

We start off in his room and we are greeted by 2 evaluators, an Occupational Therapist and a Psychotherapist. They start asking us questions, and as more people start trickling in, we have to repeat ourselves. This isn't a big deal, but it is a sign that maybe not everything isn't as it should be.

Now, I have to say, the OT was fabulous. She was on the floor with Caleb, interacting with him, watching his eye movements and motor skills, while other people were half-heartedly throwing Caleb an attention bone every now and again. There was supposed to be a speech therapist present, which is the whole reason we had to be there on this specific day, and I don't even remember hearing from one. Considering that Caleb's lack of verbal ability is our main concern, this was, well, disconcerting.

The School Psychologist, was, how do I put this... an ass. Right away he had a domineering attitude, as if he were going to control the evaluation single-handedly. He right away stated the necessary qualifications for an autism diagnosis, and they were very strict. And with everything we presented, he explained it away with, "well, he is 2 years old." Seriously? Cause I don't know any other 2 year olds to compare him to?

I think the Psychologist forgot that autism is a spectrum, and just because my child doesn't look like the picture you have in your head, it doesn't mean he isn't autistic. I have already gotten the diagnosis from 2 other evaluations, and now that my family has just come to grips with it, after watching my child for 15 minutes, this guy is going to tell us that we are all wrong and that he is just slightly delayed in his development.

A delay in his development doesn't explain his spinning, playing with his spit, lack of eye contact, lack of response to verbal stimuli, mouthing of objects, inability to spend more than 5 seconds with a single activity, inability to sit still so I can read him a book, desire to play alone or just be alone, horrific meltdowns when he gets a haircut, etc etc etc.  Let's not even mention his sensory processing disorders.

The good part is that even though Mr. Sillypants Psychologist doesn't think Caleb is autistic, it doesn't matter; Caleb still qualifies for their Early On services. He will get 1 hour a week at home and 1 hour a week at school; his time will consist of speech/language therapy and OT, just like at The Kaufman Center.  The therapy at the center will be with a couple other children around his age and ability level, which I think will be great for Caleb!  I am super excited for him!

As I previously stated, I really liked the OT, and I mentioned such to her. I asked her to be Caleb's therapist, and she said she doesn't control it, but rather kids get placed based upon which school is closest to you, and she works out of a different one. Her normal school is very close to me, so I will very much push for her. Caleb really liked her and so did I; she was smart and in tune with Caleb.

So, in short: There are stupid people, but there are also good people. Here is hoping we get to see more of the good people.

Nightmares at Naptime

• 8:30am - Occupational Therapy

• 9:30am - Speech and Language Therapy

• 11:00am - Farmington Schools Evaluation  (more on that later)

• 2:00pm - Caleb is exhausted.  He passes out in his crib.

• 3:42pm - Caleb wakes up, screaming crying.  I think he had a nightmare.  I pick him up and carry him into the living room where we watch some tv, eat pretzels and drink apple juice.

• 3:52pm - Caleb is passed out asleep, snugged in my tight embrace.  He still is holding a pretzel in one hand and my finger on the other

• 4:12pm - Show is over.  I pick up a groggy Sir Caleb and put him in his crib.  There are a few moans of protest, but overall he is a quiet monkey.

Poor monkey.
Those nightmares really mess with him.

Yummy Fingers

Caleb was watching GiggleBellies with his hand stuffed in his mouth. This seemed to be quite comforting to him.

Music Videos + Cuddles = Sweet!

Caleb has an ever growing fondness of music videos.  His current favorite, hands down, is Lady Humps.  He LOVES Ms. Fergie. Whenever I get on my computer, like right now, he starts begging me to YouTube the video.  It is cute and super annoying at the same time.

We were able to get some videos on the Boxee (which we LOVE) and let him watch them on the television.  He will run to the couch and stare, slack-jawed, totally immersed in the music.  He might even give us some super sweet cuddles.

Tunnel Vision

After Speech & Language and Occupational Therapy this morning, Caleb was looking forward to burning off some steam on his own, without anyone telling him what to do.  He didn't want me to direct him in anyway - he was a free bird, dammit.

So, I gave him space and allowed him to direct me to what he wanted.  He quickly pulled me toward the tunnel I tucked behind the chair in the corner of the room.  He couldn't get to it, so he needed me to pull it out.  Once I brought it out to the living room, he was in heaven.

For 45 minutes, this kid was crawling though, playing, and rolling around in the tunnel.  And since crawling through the tunnel is part of his OT homework, this was totally a win/win situation.  Near the end of his tunnel time, I pulled out my camera and got a couple cute shots of my monkey-butt.

Easy Peasy

After a very grueling week, I have had 2 easy peasy days.

On Saturday, I wasn't feeling well, so my husband gave me the day off.  For reals.  I was able to crash in bed and sleep.  I think part of it was that I was just so exhausted; the previous 5 days gave me a real run for my money.

So, today we had a backlog of errands that had to be run AND I still wanted to hang out with my mother.  So, my mother and I ran the errands sans baby while my husband again hung out with Sir Caleb.  (Seriously, is my hubby awesome or what?)

My mother and I went to Ikea, Costco, and Trader Joes.  It constantly surprises me how much you can get done with you are not hauling a 2 year old around.  Plus, it was nice to be out with my mom; I was able to open up to her and talk about my feelings.  Yes, there was a bit of in-car crying, which always sucks cause other people can see you and you have no good way to fix your makeup afterwards.  But it felt good to let it out.

At Ikea we got Caleb a tunnel for him to crawl through; this was prescribed to us by Occupational Therapy.  I was told to hold a favorite toy at an opposite end in order to entice him to crawl through, however that was not necessary.  When we got home and unpacked the tunnel, my little guy couldn't get enough of it.  He was smiling so big, it made everyone else smile, too.  The best part is that it wore him out!  Yay!

At Trader Joes I got 10 bags of freeze dried strawberries.  I mean, I got other groceries as well, but this is an important part of our shopping trip.  Caleb can go through a bag a day, and sometimes this is all he will eat.  At checkout, the cashier was surprised at the amount, and I explained that my son was a picky eater.  In my head, I was guessing that her initial reaction was that my son was somehow "running the show" or because I am a heavier person, I must not understand the importance of nutrition.  I just feel like she probably didn't think, "oh, autistic kid."  Before I read about autism, I wouldn't have.

I am constantly feeling like a bad mother.  I know that my house isn't clean enough.  I know that I should give my son more baths.  I know that my son barely eats, and when he does, he doesn't get enough protein or veggies.  I know that I don't do every suggested therapy homework everyday.  Why?  Because I am fucking tired.  Not just tired.  Fucking tired.

2 year olds are difficult.
2 year olds with autism are fucking tiring.

Don't get me wrong.  I love my son with all my heart.  But, I don't love his autism.  I would wish it away in a heartbeat.  I feel like autism is this wet, heavy blanket that has obfuscated his real self.  I feel like therapy is the process of removing this blanket and bringing my Caleb back to me.  The Caleb that doesn't need his binkie 24/7, the Caleb that doesn't meltdown at the drop of a hat, the Caleb that talks.  My Caleb.

I will see him soon.
I hope.

Woe Potato Me!

Today was not a good day.

There was biting, hitting, crying, and falling limp onto the floor in a screaming tantrum.
The only good part was that he tired himself out so much that by 2:00pm, he fell asleep in his high chair during lunch.  Seriously, I turn to my left to look at him, and his head is suddenly hanging down and he is out like a light, with a piece of pita chip sticking out of his lips.  Classy.

Yesterday was a bit better.  As per his therapist's suggestion, we started acclimating him to touching different textures, especially the wet ones.  I decided that this would be a great use of some of the pouched food I bought that he refused to eat.  Bring on the white beans and sweet potato!  I didn't really think this one through...

I am sure you see where I am going with this, but let me just add that I made the super smart decision to put the high chair in the living room, hoping that a change in scenery would help him not associate any negative feelings about sensory training with his feelings about eating.
And... my carpet is a light beige.

Did you know that sweet potato stains?

See, Caleb made a mess.
He clapped his hands together and saw it fly all over the living room.  This was great fun for him.  Sweet potato was flying everywhere.  On the floor, on me, on the dogs.  I clearly did not plan ahead well.

Thank goodness I did plan for him to have a bath afterwards; the bath was already full of water when he was done making a mess.  I did torture my poor baby by washing his hair (and yes, I even conditioned it) and I was cruel enough to wash his face.  But, Caleb loves his bath time enough that I think he forgot all of the sweet potato horror, and how he got about a full teaspoon in each eye.

I, on the other hand, did not forget the sweet potato incident so easily, as I spent a good 30 minutes on my hands and knees, spot-shotting the carpet during Caleb's nap.

Freeze Dried Strawberries

After a breakfast of freeze dried strawberries, freeze dried yogurt bites, and pretzels.

Occupational Therapy Evaluation

Yesterday morning was Caleb's Occupational Therapy evaluation.  I was fairly nervous going in because I didn't know what to expect, however my nerves a bit calmed by my husband who lovingly joined us.  Before the evaluation, I had to fill out a sensory survey while my husband kept an eye on Caleb.  Filling out the survey, I could already tell that this wasn't going to go well. 

• Does Caleb chew on things that weren't food? Check
• Does Caleb lack eye contact?  Check
• Does Caleb ignore you when you call him?  Check
• Does Caleb have only a few things that he is willing to eat?  Check
• Is Caleb sensitive to textures of clothing?  Check

I was able to fill out the survey fairly quickly since I have been doing these things over and over these days.  Then we were on to the evaluation!  The lady who was doing the evaluation, Jessica, was the Director of Occupational Therapy and Sensory Integration Programs.  She was nice and super friendly and immediately put me at ease.  Plus, she has a kick ass name.

First we talked about Caleb and discussed our main concerns.  I think, for the first time, I came clean with someone else other than my husband about what my child actually eats.  I have gotten slack from everyone (family, pediatricians) about my child's eating habits, but truth be told, I cannot change them.  I feel the guilt of being a bad mom, and it weighs heavily on me.  Jessica told me something very important.

Jessica said that while pediatricians and everyone else says, "oh, they will eat when they are hungry," that is not necessarily true with Autistic children.  Autistic children WILL starve themselves.  Wanting to feed your child is a primal instinct and when it doesn't go right, it can feel devastating.  Therefore, we mothers get calories into our child anyway we can.  So, yes, I give my child juice (or sugar water if that is what you want to call it) and most times all he eats for a meal is freeze dried yogurt bites and freeze dried strawberries (because he cannot stand the texture of anything else and he lacks the muscle strength in his jaw to chew anything tough).  And yes, I have given my child a handful of chocolate covered raisins just so he would eat something.

When Caleb moved to the gym area, I thought he would be in his element; in the summer, he loved to run around the park and climb up and down the structures.  I don't know if it was because of the soft floor or the different environment, or because he is truly regressing, but Caleb didn't want to climb on anything.  He wasn't aware of his body or his surroundings and all he wanted to do was to go back to the evaluation room and play with cars.

Jessica tested his tolerance of textures on his hands, which I had previously warned her was something that bothered Caleb.  She put some applesauce down on a desk and had him play with it - he immediately put his applesauced hands into his hair and rubbed his eyes.  Jessica explained that these behaviors are self-soothing behaviors.  He definitely has sensory issues.

Jessica took time after the evaluation to tell my husband and me her diagnosis.  I don't remember a lot of it.  I remember that I cried.  I don't know why.  I know that Caleb has these problems, but I guess having them confirmed hurts.  Does this make sense?  Probably not.  But every mom wants their child to be perfect.  And yes, I know, some moms of Autistic children will say their kids are perfect, but you know what I mean.

Everything ended on a happy note though.
My husband and I were asking Jessica about Caleb's future.  We wanted to know if Caleb would always have problems going forward.  Jessica said that considering the type and severity of Caleb's issues, with the proper therapy intervention Caleb could be Autistic-symptom free.  That is amazing and we have such hope for our sweet boy!

In the meantime, however, we have a ton of homework to make sure he gets to this incredible goal.  So, if you need us, we will be playing with applesauce, digging in bins of rice, and crawling through tunnels. 

YouTube Adventures

Here is my husband and son looking at videos on YouTube before bedtime.

Destination YouTube

My husband and I are constantly exploring new ways to connect with Caleb, and one way is through music.  He loves music, but like all things, he is very opinionated about it.  He has very strong opinions about what makes a good song. 

• First of all, female singers are bad.  He will not stand for them.  I think my horrible singing to him as a baby is to blame for this.
• Slow songs or ballads are out.  These are also bad and should burn for all time.
• Guitars are a must and should be featured strongly.
• The music cannot be too fast, or Caleb cannot follow it; these songs too must burn.

My husband, Caleb, and I will gather around the computer (and getting Caleb to a computer is like getting a Bear to a pot of honey) and venture onto YouTube. From there, we will try to guess which songs he might like.  If Caleb likes the song, he watch the video.  If Caleb does not like the song, he will move our hands to the keyboard or he will smack his hands on the table.

Quite often during the video, Caleb will play on our computers.  He likes to see what happens when he pushes the buttons.  My new computer has a touch screen, and so he is also experimenting with that.  I love to see how fearless he is and how he learns from trying.  For example, he knows that with Windows 8, the windows button will bring up the panel screen, and if you push it again, the panel screen will disappear.  He likes to change the volume, page up and page down, and sometimes even restart the computer.

So far, Caleb has approved of:

• Duran Duran - Come Undone
• U2 - Vertigo
• New Order - Blue Monday
• Led Zepplin - Black Dog
• Klingon Style - a parody of Psy's Gangnam Style
• Ylvis - The Fox
• GiggleBellies - Cause it is Kiddie Crack and you know it.

My father was an audiophile, so I have a ton of music in my back pocket.  My husband and I have exposed Caleb to countless songs, but quite often he will tap out after a couple seconds.  We are always trying to find new music for him, and hopefully one day this list will contain as many as 10, maybe even 15 songs!

Bubble

Yay upon Yay!
Caleb said the word, "Bubble" at therapy this morning!
In fact, he said it twice!

How encouraging!
He loved playing with the bubbles at therapy and I look forward to trying to replicate that play at home. 

While I watched him through the two-way mirror, I realized that Caleb doesn't perform certain acts upon command even though I thought he did.  The therapist tried to get him to clap when he did a good job, but he wouldn't.  I was really surprised.  It is so difficult to just sit there, watching your kid; you feel like you should be doing something to help out!  But, now I know what to work on with Caleb at home: getting him to imitate me with sound and animation.

Caleb was happy and smiling all through therapy, and was sad to leave.  He was so distraught that after I put his coat on, he ran away from me and found his therapist down the hallway.  He really loves her and I love that he loves her.  It is great to see him so open to building new relationships.  There were tears as we made our way out to the car, but I planned ahead: I had a bottle of juice waiting for him.  And in this house, juice can solve any problem.

On Wednesday, after our speech and language therapy, Caleb has his Occupational Therapy evaluation.  I have no idea what to expect, but I am glad that my husband is taking time off work to be with me.  When Caleb had his initial evaluation, I had to do it alone because my husband was out of town, and it was emotionally taxing for me.  I know my husband wanted to be there, and I don't blame him for being gone; I am just thankful that he will be there on Wednesday.

Fingers crossed for Caleb!

Books

In order to learn more about what Caleb is going through, I am trying to research Autism and audio processing issues as much as possible. 

My husband and I both have degrees that deal with how the brain works and how people learn; my husband got his B.S. in Psychology at the U of M and I have a Master's degree in Instructional Technology from Wayne State University.  (I completed the coursework for the Ph.D. but I got pregnant with Caleb so I have yet to take qualifying exams or write my dissertation.)  My husband has a better grasp on why Caleb acts or reacts the way he does while I better understand the interventions.

Another thing my husband have in common is that we deal with adversity by researching the crap out of it.  That is probably why I have gone to every blog and every website imaginable, reading whatever I can about Autism and language/speech problems.  However, I have gotten to a point where I need professional advice.  That is why I have turned to books; I would have preferred to stick with free information, but the following books are worth the money.

For Autism:  The Reason I Jump - This book is written first hand by a 13 year old Japanese boy with Autism. It was written originally in Japanese and then translated into English; there are a few phrases that I wonder about in terms of translation, but over all the translation feels very sound and seamless.  I have not yet finished this book (I am about 60% though); so far I have been felt intrigued, compassionate toward the writer, and a greater understanding of what my kid is going through and what he might go through.  There is a lot of repetition in themes, such as how hard conversation is and how desperately this kid wants you to accept him and be patient with him.  There are also some real heartbreaking parts, including how hard he is on himself.  Taking place in a question and answer format, this book is an easy read, and even better, easy to read in quick segments.

For Audio Processing Issues:  The Sound of Hope  - This book is a book on Central Audio Processing Disorder, which cannot be tested and diagnosed until a child is 7.  That said,conditions like CAPD (or APD) are found in much younger children like my son.  My son's therapists don't have a name for Caleb's condition because of his young age, so they say that he has "impressions" of APD.  But, basically, my son has APD, even if he is too young for the diagnosis.  This book is wonderful to read, and the foreward written by Rosie O'Donnell is particularly touching.  While I understand that not everything in this book is going to apply to my child since the gap between Caleb's age of 2 and the diagnosis age of 7 is quite great, the overall science remains the same, and that is what has sustained me and leads me to recommend this book.

Sick Little Monkey

We have a sick little monkey on our hands.

Yesterday, his nose was like a faucet.  I always thought that when I had kids of my own, their snot wouldn't bother me, and for the most part, it doesn't.  I can pick a booger out of my kid's nose without a second's thought.  HOWEVER, what has been coming out of my son's nose lately is a whole other story.  He would sneeze and a full tablespoon of ickyness would come flying out of out of his nostrils.  I would squirm and recoil and quite often call my husband wipe my son's red and sore nose. 

Caleb and I have both been sick; since I have diabetes I usually feel pretty sluggish when I am under the weather.  I am lucky that my husband has an amazing immune system and so far only has a scratchy throat.  The only good part about Caleb being sick is that he gets pretty touchy-feely.

Today Caleb woke up with a pretty warm forehead.  He was whiny and he stumbled when he walked - it would have been funny if Caleb hadn't been so pathetic and sad.  I spent the entire morning right by Caleb's side, letting him direct me.  Mostly he just wanted me next to him, which I was more than happy to do.  It was really nice to be so wanted.

The best part of the morning was when Caleb wanted to cuddle with me.  He was lying on me when we were sitting on the floor so my husband suggest that we lie on the couch.  I picked up Caleb and positioned him so he was lying on me with his head resting on my breast - really, the best pillow in the world, right?  He stayed cuddled with me for a little over an hour.  That is the longest cuddle he has ever had with me.  I was totally uncomfortable after 10 minutes, but I wasn't going to move and risk Caleb getting up and leaving the cuddles.

That one hour was amazeballs.  Having him nestled against me, the length of his body against mine.  There was a closeness there that I hadn't felt in a long time.  It was truly beautiful.

Okay, so he does want physical affection sometimes.  This means something, right?
If he didn't want it ever, we would have a longer path to take, but the fact that there are times when he does want to cuddle me and my husband means that we have something to build upon.

These little instances bring sparks of hope in my life.
I have great big fears hanging over my head every day.
Will my child think of conversation as a huge effort?
Will my child resort to violence when upset?
Will my child express affection physically?

I need these moments of comfort, of hope, of beauty, that I got to experience today.  Even if they come in a snotty, feverish package.

Alex, Steve, and Caleb makes 3

Today started out pretty rockin'.  Caleb slept in a bit so I was able to drink my coffee and read Huffington Post at my leisure in absolute silence.  Amazing.  Caleb was in good spirits when he woke up and in the late morning we packed up and ventured out to run a few errands. 

First we went to Target.  I always go to the toy section.  Cause I am a sucker for a cute face.  While I was looking at their action figures, I listened to an older boy go on and on about how he loves his Buzz Lightyear toy; My friend Audrey's son also has that toy and is very fond of it.  When I handed the toy to Caleb, he was enthralled with it, even though it was still in the box.  (Right now Buzz is in our bedroom - we are waiting for the weekend to give him the gift.)  I don't make these purchases every day, but I justified it by the fact that my birthday is in February, so I will just use money from my bday to cover it.

My husband and I are always trying to find Caleb just the right toy.  For example, I will see Caleb enjoying a toy during his therapy session and then I will try and find that toy, only to learn that it is discontinued.  Or I will think that I have the perfect toy for him and then he will use it once and never touch it again.

I listened to our first speech and language evaluator about getting toys that have a "doing something" and then "get something" that is musical.  So far those toys are fairly entertaining for Caleb.  But, mostly loves his cars and his duplos. The evaluator also mentioned something about getting him figures so Caleb can "put them to bed" and "brush their teeth," which I put in quotes because these would be directives we give to Caleb. 

Instead of the traditional dolls, we got him superheros.  Because, why not, right??  And since we live in a suburb of Detroit, he totally had to have a talking Robocop!  Today we unwrapped Robocop and Captain America, each a 12" action figure, and let Caleb play with them.  Even though my husband and kept any small choking hazard (including Robocop's sweet guns), Caleb enjoyed every second with his new un-caped crusaders. 

Now only time will tell if Caleb likes these new toys for longer than 24 hours.  Right now my only worry is whether Robocop is going to put some hurtin' on me when I tell him to eat his vegetables.

First Day of Speech and Language Therapy

At first we thought that Caleb's Speech and Language Therapy was going to be postponed again because of the snow, but luckily I got a call this morning saying that even though the center was closed for part of the morning, Caleb could get an 11am slot with his therapist!  I happily agreed and snatched up that slot immediately.

Caleb's therapist is seriously adorable; I can see why kids like her.  She is in her 30's and is around 5 feet tall and maybe 100 lbs.  She looks like a big kid herself.  Caleb took to her immediately.  She explained to me that during the first session they basically get to know each other and figure out where Caleb is at developmentally.  I got to watch behind a 2 way mirror - it was strange watching someone else interact with Caleb.  I found myself silently rooting for him - beaming when he would stack the rings correctly or direct the therapist with his hands while grimacing when he would put the stacking cups in his mouth instead of one on top of the other.  30 minutes flew by, and afterwards Caleb's therapist told me her impressions. 

Basically, her initial impression was that Caleb is at the mild end of Autism.  He is a happy boy who wants to play and learn.  He also did very well physically directing the therapist to what he wanted, such as putting a balloon in her hand and then putting her hand on the air pump that blows up the balloon. 

For the first time in a long time, I feel like a good parent.  I have worked very hard to get Caleb to use physical indicators to show what he wants.  For example, I hold up two food items and he needs to indicate which one he wants in order to eat one.  This uses his drive of hunger and the reward of food as a powerful motivator.  I also do it during play, letting him direct me.  I find that if I am quiet and let him lead, he will tell me what he wants by moving my hands or putting items in my hands.  This is a behavior that I have worked on and encouraged through hours and hours of mutual play.  I honestly sit on the floor and play with him for hours each day.  And for so long I have felt like I have been failing or what I have been doing isn't enough.  But now it seems that maybe I have been doing something that actually matters, and for me that is amazing.

I am also super relieved that Caleb's therapist thinks that his Autism is mild.  I have been searching other blogs about Autism, and frankly, a lot of it scares me.  I read this moving piece about this father who had to put his violent child in an institution.  The institution ended up being the best thing for both the son and the family, but Caleb is my only child, and I cannot have any more kids.  The idea of my only child being institutionalized breaks me down to tears.  I hope that Caleb never gets violent.  I hope that Caleb has a normal life.  And while, yes, it is most important the Caleb has a happy life, I still want him to be successful in the traditional sense of society.  I am not quite ready to change my dreams of that yet.

Another Good Day

I don't know if we were experiencing a long stretch of bad behavior or if we are currently experiencing good behavior, but for the past two days Caleb has been back to his old self.

Now, to be fair, Caleb still isn't perfect when he is "back to his old self."  Caleb is still nonverbal, a very picky eater, and expresses a lot of autistic tendencies.  However, right now Caleb is back to playing with his Duplos, touching us and enjoying our touch in return, actually asking us to play with him and engaging with us, and sleeping on a regular schedule.  These things are amazing.

I have to admit, though, I do get jealous of other parents.  A friend of mine with a daughter who is 6 months younger than Caleb has mommy-daughter activities that Caleb and I could never do.  For example, she and her daughter decorated cookies together, went to a concert together (and her daughter stayed right by her side!), and go to book readings together.  I often wish that Caleb had the ability to sit still and pay attention to a book, but that has never happened.  Then today my friend writes on Facebook that her daughter said her own name.  News like this make my heart sink.  I fear how far Caleb is falling behind in milestones and it crushes me.  But, I am also extremely selfish.  How I long to hear Caleb tell me what he wants.  How I long for a son who doesn't run from me every chance he gets.  How I long for the spoken and physical reassurance that my son loves me.  I am selfish because I see all these things I want and I realize that Caleb is more difficult than the average child and maybe what I want is for things to be easier.  Yes, I do.  I want things to be easier with Caleb.  Is that so bad?

I think I have to keep in mind the reality that my family is in.  This means that my frame of mind must change and I must also change my expectations.  I cannot celebrate when Caleb says his own name, but I can celebrate when he takes his nap on the first attempt, or when he eats a balanced meal.

That is why today was a good day.  Did Caleb talk?  Of course not.  But he ate his beans and slept for almost 3 hours!  He played peek-a-boo with his closet door and came running into my arms with a huge grin on his face, so excited to run up my chest and do a back flip onto the floor. 

I need to remember that other people's milestones don't necessary apply to Caleb.  We are on a different path.  And we hope that Caleb will eventually catch up, but the important part, I think, is that we are on this road together, enjoying the good days when we can.