Saturday, December 31, 2011

2011. It's been real.

I have to say, 2011 was really a challenging year for us.

But here we are, at the very end, and all I can do is look forward with hope and optimism for 2012.

In April of 2011, Jonathan was officially diagnosed.  By that time, we had been through so many screening, tests and appointments, the actual "your son has Autism" label was a sigh of relief.  Finally putting to rest what we already knew, and gave us the opportunity to move forward. 

Moving forward was not easy.  It took time to get him therapy, to get used to our new schedule and routine, and to let that routine sink in. 

I also had to finish my mourning.  I think this is pretty typical for any parent with a special needs child.  The letting go of your lofty dreams and expectations, and finally being able to embrace the unknown, as well as the present.  Usually the present gives you many gifts you never thought you would receive. 

This year was stressful.  This year was messy. This year was hard.

But oh the progress we've made.
Potty trained, talking, reading, and being the silly, adorable boy that he is.

We got our kitty in January of this year.
I completed my first Triathlon in July and first Half Marathon in October.
We are moving forward on Mike's back pain.
We took a parent's weekend away, leaving Jonathan with a baby-sitter for a full 2 nights.
We visited family in both Ohio and New York (car trip and plane ride!)
Mike and I both tried our hand at single-parenthood, due to business travel respectively.  And both hated it.
And you can't forget the welcoming of our beloved iPad.   

Lots of laughs, tears, frustration, a little sweat and lots of hard work. 
Summarizing it up makes it seem like it wasn't that big of a deal.  And maybe it wasn't.  Maybe it was. 

2012.  So much to look forward to.  Mike and I always sit down and write out our goals and resolutions for the year.  And I can't wait.  We have much to be grateful for.  We have much hope for as well.
We're ready to turn the calendar.   

Sunday, December 25, 2011

Our Little Family's Christmas and Hanukkah

Disclaimer:  I just feel like I should start this post with a brief disclaimer.  
We are an interfaith family.  I am Jewish.  Mike was raised Catholic.  We celebrate both Hanukkah and Christmas.  We light candles on our Menorah, and we have a Christmas tree.  There.  I said it.  No need to question what we do or how we celebrate any further.  Just like dealing with Autism, it works for us and our family.  Thank you!


Mike and I were discussing our various Christmases together. There was the one we were stuck in Philly.  The one where we all got strep throat.  The one where we all got the flu.  The one where we had Xmas dinner at Hooters before we left on a family cruise.  And of course, the many with Mike's family in upstate New York.  We realized this was our fifth with Jonathan.  The second in our house.  And this year, it was just our little family, which was great.

XMAS EVE

The day started out with a bang.  My friend and co-worker agreed to stop by dressed as Santa.  I left a gift out for him to give to Jonathan.  He rang the doorbell, and Jonathan greeted him at the door.  He reacted just the way I thought he would....huge smile, and took off running and flapping.  He knew it was Santa and was very excited to see him.  We got a few pictures.  And then Jonathan retreated to his iPad, to which "Santa" oversaw, and snapped a few pics. Our friend just let Jonathan be Jonathan, without judgment or issue.  I'm so glad Jonathan was able to see Santa without all the noise of going to the mall, fighting the traffic, etc.  We just felt so glad our friend was able to do this for us.  It was really so sweet.  
Santa and the Farley boys.  Look at Jonathan.  He looks so giddy.

Pepper had to get in on the Santa action.

Santa checking out the iPad.
The rest of the day was spent wrapping, last minute gift shopping, cooking and baking.
If you noticed in the pics, Jonathan does have a cold, so he is still a bit under the weather.  It really is a good thing we didn't do much.

XMAS DAY
The day started out with me getting yelled at.  "No Potty!"  We had a bit of a rough transition today.  Maybe it was because we were not having a "normal" morning.  But once he got settled in with iPad, he was fine.  Mike and I were able to enjoy some coffee, and I had to step back and remember...no expectations.  I had a brief moment were I felt sorry for myself that my son was not going to run down the stairs on Christmas morning, anxious to see what Santa brought...having to rip into every gift right.this.very.second.  In fact, it was quiet the opposite. 
Yes, those are all gifts for him.  And yes, he could care less.





But leave it to our cat to be the comic relief I needed to snap me out of feeling sad.  She finally climbed that tree, right before we started opening our gifts.  It was HILARIOUS!

"Gotta get that red ball...right...there."

"What?  Can't I be cute in this tree here?"
So Mike and I realized, if we were gonna get this kid to open any gifts, we had to do it on his terms.  We set the timer to 5 minutes.  When the timer went off, we would bring a gift to him to open.  That way, if he opened it and wanted to play with it, he could.  Or he could open and go run off and play iPad.  But once we got going, he totally forgot the iPad and started enjoying the generous gifts given to him. 

We still had to set the timer to every 5 minutes.  But that was OK.  Mike and I took our time, enjoyed the morning.  Opened our gifts, and had some good laughs.  It was awesome to see Jonathan excited about things.  He would grab the gift, and take off, usually to the kitchen area.  And this is how it went all day.
Thomas puzzle.  A must open now, please.

Reading his Handy Manny books
The rest of the day was pretty chill.  We watched "A Very Handy Holiday" and "Flicker Saves Christmas" thanks to Handy Manny.  And "Caillou Christmas" too.  We played more iPad. Enjoyed the new tent we got him, however, I think the cat liked to tent more than Jonathan. 

Jonathan was very cuddly and lovey today too.  Mike put it best...Jonathan's most favorite days are the ones where we are just with him.  And that is what we did today.

And don't forget about Hanukkah!
We've been lighting the Menorah every night.  So while I was getting the candles prepped for tonight's lighting, I heard Jonathan start singing to himself.  I realized, he was singing the tunes of the prayers we sing when lighting the Menorah.  Sure enough, that is what he was doing!  He got a few words, the rest was pretty garbled / made-up.  But it was in the right tune and intonation as the prayers. Just made me feel good to know that he is paying attention and is with us, even if he doesn't always seem like it, when we do these sort of things.

So all in all, a really nice holiday.  We certainly missed our families.  But this holiday served as a great reminder to us (or at least me)...we have our little family.  We may have to do things a little different.  But we keep doing it, knowing our boy is with us and will remember these holidays too.

Happy Holidays to all!

Saturday, December 17, 2011

Christmas, we've been waiting all year for you.

I feel like it began the day after we put away last year's holiday decor.

"Elmo Christmas!"  "Caillou Holiday Movie!"

We watched these beloved holiday movies in January, the heat of the July sun and now again in December.  The menorah was carried to school of WEEKS, and remains a prominent lovey to this day (currently sitting on my coffee table).  

The other day, we had a dusting of snow on the car, to which Jonathan exclaimed (per scripting from the Caillou movie,) "Snow!  It's Christmas time!"

That it is, Jonathan.  That it is.  And this year is the first year that I feel like he may have some semblance of "getting it."  He knows who Santa is.  He knows the Christmas tree.  He knows the dreidels, the menorah and the lights.  And recently, he's been talking about "Kwanzaa and the kinara."  Hey, I guess if we're celebrating Christmas and Hanukkah, we really shouldn't leave out Kwanzaa.

I'm thankful that we will be doing a low-key holiday season.  While we will miss our family and friends dearly, I'm glad that, after this especially challenging year, our little Farley Family can hibernate and do the holidays on our own terms.  No expectations...almost just like we've been doing things all along.

Oh, I have to mention Jonathan's preschool holiday program.  It was HILARIOUS.  The kids had learned three holiday poems.  And I was warned that Jonathan would probably not recite them with the class.  I didn't think he would.  During the presentation, while the quiet, calm children lined up perfectly in a line, my little hell-ion ran back and forth like a crazy man behind them.  He was smiling and flapping and looking for Mike and me.  For those who don't know him, he probably looked like a kid that had too much sugar, in the vein of Stewart from MadTV ("Look what I can do!").  But to Mike and me, we knew the running, flapping, smile combo meant one thing...he was super happy.  And that made us super happy in return. 



When it was all over, and I was buckling him up in the car, he looked at me, and started reciting one of the poems, with hand movements and all.  He couldn't do the words exactly, because that is not how he hears it.  It came out "I sabba sabba snowball.  It sabba sabba sab."  But he did the vocal inflections perfectly, and I knew what he was doing.  So I had my own, private performance.  I think MY show was the best.

So while Jonathan might not understand the difference between naughty and nice, and while he might break his record of taking three hours to open gifts, I know he is excited and happy for the upcoming holidays.   

And now he's singing "Jingle Bells" and waving at the TV along with the Elmo movie. 
Happy Holidays to all. 

Sunday, December 11, 2011

IPad apps

So, if you've been following along our little journey thus far, and I'm sure you have...you know we have purchased on iPad for Jonathan.  And there are MILLIONS of apps out there for kids, especially kids with ASD. 
My good friend asked what apps we like, so here goes!

Educational Apps:
Touch and Learn by Alligator Apps - a which one does not belong type game
Emotions by Alligator Apps - shows photos of different emotions
SeeTouchLearn by Brain Parade - a which one goes together type of game
Touch & Say from interbots - 6 different game choices varying in feelings, colors, repetition, etc
Let's Name Things by Fundeck - Attempts to engage the child in conversation with different questions

Clean Up by Different Roads to Learning - putting items in their right place game
Together by Different Roads to Learning - which one goes together game

Speech with Milo - Prepositions - very cute mouse showing prepositions

First Words: Deluxe - spelling!

Just for fun:
Thomas - by Hit Entertainment - 3 different game choices: match game, puzzle, maze
Chalkboard
Handy Manny - Disney Mobile - 4 different game choices - match game, puzzle, coloring and hide & seek
Caillou by Night and Day Studios - uses Caillou characters and pictures and child picks the letters to spell items
Talking Tom Cat - HILARIOUS!

Most of the educational apps were free.  If anyone has app suggestions, let me know too!

Wednesday, December 7, 2011

Wife Appreciation

Last week I was reminded of how awesome my wife is, when she had to travel on business for two days. Sure, it was only for one night, and sure, Jonathan knew his mom would be "out of the office" for that one night. He even seemed to be okay with me taking him to school on Friday morning, like Jen usually does.

But then it started. I forgot that I was supposed to park in a specific spot, and Jonathan was screaming "light pole!" Luckily his teachers knew what he meant and I moved the car. Oh, did I mention the kid flat out refused to put a jacked on no matter how much I tried or bribed him? So it was cold out and I was dragging him back to the car to move it. Okay, for now. We get to the classroom and he was screaming something again. Yikes. His teacher, Jamie, said to just go, which I did, but I could see Jonathan's face pressed up against the window screaming as I did leave. Turns out, he was screaming "Katie story!" Meaning, the book his therapists made about one of the therapists who left the company, but who Jonathan is still attached to.

He also refused to put his pajamas on that night, and went to sleep screaming and crying. He is now potty trained for the most part, but we still put a pull-up on him at night. But he refused to even put that on, no matter what I did. Turns out he was just tired and missing his mom, and that's how he decided to act out--falling asleep naked. So I waited until he fell asleep on the floor, then went in and slipped on a pull-up and carried him to bed.

The next day we went grocery shopping, and again he was freaking out about his coat. I finally got him to put it on, but it took a good ten minutes. We went to Trader Joe's and to our regular store, Copp's, and all was okay. The rest of the day was okay too, but it's nerve wracking trying to remember to take him to the potty every hour or two and trying to avoid an accident.

Oh, and Jen is really great about knowing what to bring, everywhere. Meanwhile, I left the house without an extra pair of underwear or his potty seat. And he had two cups of apple juice in him. So when we got to Trader Joe's, we went straight to the potty, and luckily he was able to go there. Whew.

But let me tell you--I was frazzled by the time Jen got home Saturday evening, and Jonathan was so thrilled to see her and to have his mommy put him to bed. And I found yet more ways to appreciate her and what she does around here.

Sunday, November 27, 2011

Thanksgiving Recap

Before jumping into this post, I would first like to give thanks....
Thanks to Mr. Steve Jobs, may he rest in peace.  Without him and his iPad, our trip would have been completely different.  haha!
Being "calm and quiet"


As you can see, we are home.  We survived travel, plane rides, dinners, etc.  Jonathan was a superstar.  AND, still is rocking the potty training like a champ. Not all days and moments were sparkling and gleaming...but I think we all learned from the good and the bad and the bad and the good.

HIGHLIGHTS:
- Every time Jonathan saw one of his uncles, he would say their names and point to them with such delight.  "Uncle Jake!" "Uncle Bob!"  "Uncle Tom!"  At one point, as we were leaving dinner, he turns to Jake and says, "Come on, Uncle Jake. We go to Grandpa's house!"
- When saying hello and good-bye to people, he looked at them directly in the eyes.
- A hilarious moment...my father-in-law has a lovely woman who cleans his apartment named Rosa.  We crossed paths at one point with her.  I told Jonathan to say hola to Rosa.  And he says, "Hola, Mayor Rosa."  Mayor Rosa is a character on Handy Manny. So of course, this Rosa must be a Mayor too!  And when I told him to say adios, he said, "Good-bye, Mayor Rosa."  She got a kick out of it too.

Showing off his iPad skills to Uncle Bob, Daddy and Aunt "Kaffy"


MOMENTS OF CHALLENGE:
- Don't take your child to a loud, hot and cramped Chinese restaurant for a 3-hour meal at 7pm.  It didn't work for us.  Jonathan and I had to leave dinner early...he was tired, fussy, and we could sense a temper-tantrum coming, like a storm tracker smells a storm.  So we left, while Mike and his family enjoyed dinner.  And it really was OK.  I realized that Mike and I do know Jonathan's limitations, and need to speak up when it is time to say so.  Also, it helped prep us for the meal times and day events for the rest of the trip.  Each day, I would write out the steps of the things we were going to do, and review them with Jonathan...very similar to what I do at home every morning during the week.  And it worked!  He knew what to expect ahead, and didn't fuss later.
- Don't sit in the last seat on an airplane...second to last row is ok, but not the very last.  There is no window.  You can't see jack.

Honestly, I am so glad we did the trip.  Jonathan got to spend time with family, knows his Aunt, Uncles, cousin and Grandpa better.  And they were able to see him and know him too.  I think the prep work ahead helped, with the book, and later, the daily schedules.  So really, I should be thankful for the time we had together.  And for Steve Jobs too.  (have I mentioned Jonathan loves his iPad?)

I feel like I have so much more to say about the trip, and may add more later.  For now, I'm going to sit.  Oh, and enjoy the Thanksgiving meal Mike is making.  After all, we still have to have our Thanksgiving at home. 

Too cute not to add.  Pepper tried to be our stow-away.  She was happy when we got home, and her boy was happy to see her too. 

Sunday, November 20, 2011

iPads, Potty, Thanksgiving, oh my!

A quick glimpse into a convo Jonathan and I had tonight.

Mom: OK, Jonathan.  One more show.  Make it count.
Jonathan: One.  Two.  Three...
Ahhh, I forgot.  He takes it all so literal.

So, if you follow my Facebook, you will have seen we purchased an iPad for Jonathan.  Not only am I excited for him to use it for therapy, but we also leave for NY soon, and it is a great time-sapper for the airport. 


He LOVES it.  Although, I can see him becoming obsessed and more separated from human contact...which is what we're avoiding.  But where is the balance?  I told him the iPad had to go sleepy, and he broke out in tears.  Like, heartbroken, his best friend just died, tears.  But I'm sure we'll figure it out.  Since he is so highly motivated by it, I think it would be best to use it as a reward and time usage.  Of course...after our trip.

And in potty training news:
Mister Rockstar Potty Trainer is doing great.  He has maybe one accident per day.  But really, I can't complain!  He was wearing only pull-ups just a few weeks ago.  Now he is a potty pro.  And today, for the very first time, he told me he had to go, rather then us taking him up at scheduled time.  Amazing.

So, now we'll see how Thanksgiving goes.   Jonathan has been reading his "Jonathan Goes to New York for Thanksgiving" book.  He really likes looking at the pictures of his cousin Thomas.  I think it helps that his name is the same as the train.  And Uncle Bob has the same name as Bob the Builder.  All bonus points in his book. 
So wish us luck. Recap to follow.
Prep for the worst and hope for the best.  :)

Sunday, November 13, 2011

P-P-P Potty - Day 3

If you're still reading about our weekend, you must be either family, or really like me ;)

So today, I think was really successful!  We laid low and didn't really leave the house.

Looking at my "potty log" for the day, Jonathan successfully went 7 times on the potty, and only had 2 accidents.  We were going about every hour.  He had his 2 accidents back to back in the afternoon, so I moved our potty visits to 45 minutes - success - 50 minutes - success - 55 minutes, etc.  I think that helped him build up his confidence again to go on the potty. 

Funny, when he couldn't "go" he would look at me and say, "help.  help please."  Sorry kid, can't help you there!

And we did a lot of playing.  Putting puzzles together, played blocks, more time on the computer playing the Caillou games, and even threw in a few Handy Manny episodes.

I'm a little nervous for tomorrow.  But I need to let go and put him in the capable hands of his teachers, therapists and his Daddy.  I've just been the main go-to all weekend.  But a bird's gotta fly, right?  ha!!
This is the most potty success we've ever had.  So I'm feeling pretty hopeful.  At least for now.   

Saturday, November 12, 2011

Potty Post - Day 2

It is 7:15pm on Day 2, and I'm still alive.  Day 1 and Day 2 are in the books!

We kicked off this morning, after sleeping in (bonus!) at 7am.  Kid's pull-up was dry.  He was mad to go on the potty, but he did it.  We read a book...and success!  Later on that hour, an accident of the number 2 variety showed up soon after, but we haven't really been focused on "the deuce." So I wasn't too worried.

I was worried about the long morning ahead.  We were back to 50 minutes on the potty and 10 minutes off. Somehow, Jonathan was REALLY interested in computer games on my laptop.  I thought for sure he would want to watch DVDs on his portable DVD player.  But he wanted nothing to do with that.  He wanted to play a Caillou game I have on my computer.  And then a funny thing happened.  His first 50 minutes was up, without success, but he didn't want to get up.  He wanted to keep playing.  So I let him...and 20 more minutes later...SUCCESS!  (each time he has a success, we knock off 5 minutes on the potty to 5 minutes more of a break).

King Commode - Potty, 'puter, and Popcorn


And that's what we did all day.  Played on the computer, success, break, accident, back on the potty, played on the computer, success, break, accident, back on the potty...you get the picture.   I was pushing the liquids the whole time too.  My brother accused me of water-boarding when I told him.  Ha!

Mike did give me a reprieve.  I was able to sneak in a run and 3 loads of laundry. 

But I have to say, I kinda enjoyed my one-on-one time with Jonathan.  We did a lot of laughing.  I was forced to focus on the playing the games with him, and sitting with him, rather than my usual running around the house doing this and that.  This one game he really enjoyed was a memory game, where he had to match a picture (ie. a cow), with the word (COW).  There are probably a dozen different images and words, and he knew them all!  Totally site reading.  And the best, he understood the memory game aspect of it, which he didn't like to do before.  He caught on and remembered where items where, and I saw him do it.  One of those moments that if I didn't stop, I wouldn't have caught it.  So I guess, I'm grateful for this potty weekend in other ways besides the whole potty training aspect.

Mommy and Jonathan in all our glory!


So the last few potty attempts, we go up, and he goes right away!!!  YAYAYAY!! We are currently on a 45minute break.  I think the kid has peed in the potty like 10 times today (thanks to all that water-boarding). 

I know this is not the "end-all-be-all" to our potty journey.  But feels good that we've made strides in a positive way.

uhhh...gotta go.  He totally just crapped his pants.

Friday, November 11, 2011

Big Potty Day - 1

We had our big potty day kick off today.

He went on the potty this morning, and received his reinforcer of choice for going in the potty, a nutter butter cookie.  We have signs all over the bathroom and den "First- pee pee in potty.  Then - get a nutter butter!"

After school, he came home, and his therapist started potty day, which equaled hanging on the pot until success.  55 minutes on, then 5 minutes off.  Then, when he has success, 50 min on, 10 minutes off, and so on. 

First success this afternoon happened around 3:30.  He did great!  So so so proud.

He had an accident around 5:50.  Back on the potty.  Success at 6:50.  Hooray!  Accident at 7:35. 

And there you have it.  A few successes.  A few accidents, but I think you'll have that. 

I wanted to cry when the last therapist of the day left.  It was nice to have a third-party back-up person.  So this weekend, it's me and hubs.  I think he's scared of me.  I'm a little grumpy. 
But look how cute that tushy looks in his big boy underpants :)

Sunday, November 6, 2011

Everyone is an Expert

So I know there is a lot of information about Autism out there.  And I think it is great.  Awareness for the disorder is front and center.  Families are telling their stories, just as we are.  More and more people are becoming vocal, and it is empowering and wonderful.

Here is the catch.  I get unsolicited advice from people who may have watched a special or a documentary on this or that.  And all of a sudden, they are an expert. And really, sometimes I just don't want to hear it.  It's not that I don't want people to suggest things, or bring Autism up. It is just that this is sometimes hard enough as it is...and you're not living my life.  You're not HERE for the struggles, the tantrum, the tears.  You're not HERE for the joys, the laughs, and the breakthroughs. 

It is great that a woman from India tore paper to get her child out of his own world.  It is amazing that by switching to a strictly gluten-free diet, some kid can't even be detected as being on the spectrum.  And good for you, for trying the hyperbaric chamber clinic, that happens to be around the corner from my house. And the man who took his child to Mongolia to ride horses and see Shaman is a visionary, and did right for HIS family (it was a good read though).

We are doing the best we can for now.  We are taking this day by day, as any family can.  Do I want to learn more?  Of course!  But I need to get there in my own time.  And sometimes, I don't want to think about Autism.  Sometimes, I just want to watch TV, or be at work, or G-d forbid, relax.

I may be a little sensitive right now.  But these are my honest feelings.  I don't want to be unapproachable.  I think I must put up a good front...and at the same time, I feel like I'm always showing my cards. Just understand, none of this is easy.  And no matter what, we're doing the best we can, for now, for our son.

In other news...Potty Day is scheduled for Friday.  As the great Baby Bear said in "Elmo's Potty Time" movie, "We'll let you know how it all comes out...more or less." 

Quirky Crap My Kid Does

Jonathan memorizes cartoon episode.  Current favorite is Handy Manny (it used to be Caillou).  Handy Manny carved pumpkins.  That is why Jonathan knew to say "Two eyes, then a nose, then a mouth."  It is part of him scripting that he does.  It is funny that he knows the right situations to pull out the right script.

So when we asked if Jonathan wanted to go to the bowling ally, we knew he would be all about it.  We currently have 3 episodes of Handy Manny's that revolves around the bowling ally.  He, of course, brought his tools with him.  I just didn't realize they would also be playing.  I hope I didn't have to pay for their lane.

Pat and Stretch Go Bowling!






As you may have read, Jonathan has an obsession with yellow milk.  I bet you didn't know, yellow milk also dressed up for Halloween.  I mean, he is a member of the family.


Looking smart, yellow!



Oh, and don't leave out Pepper in the quirky department.  She is pretty funny herself.


Old McPepper Had a Farm!







Just a small helping of quirk.  :)

Wednesday, November 2, 2011

Halloween Recap

Well, Jonathan's stomach bug caught up to me.  So I'm home from work at the moment.  Oh joy.

Anyway, Halloween. 
He wore his costume to school, and promptly took it off when we got there.  Not sure if the teachers got it back on for a class picture.  All the kids looked great.

I came home from work around 5:45.  His therapists that day had done some social stories about "Trick or Treat."  So when I asked if he wanted to go, he said, "Trick or Treat!"

He put on the costume, again, Handy Manny, which was a red and white baseball cap, a green tshirt (coat on over it b/c of the weather) and a yellow tool belt.  I held his tools, and we were off. 

We went nextdoor to our friend and neighbor.  He rang the bell...and then opened the door and let himself in!  It was OK, since we do go over a lot.  He then took his costume off, and we hung out for about 5 minutes or so.  He didn't want to put his costume back on, so I added it to my armload.

Next stop...our house!  Lots of trick or treaters were just leaving, so he wanted to ring the bell and have Daddy answer.  It was sweet.

We went to three more houses.  Each one he tried to go inside.  Once he was successful, but we knew those neighbors too, so it was OK.  After the third house, he turned to me and said, "Go home!  See Daddy!!!"

We made it home.  We passed out candy and ate our lot. 
All in all, not bad.  I'm glad he was able to express his wants and his limits.  He even said, "Trick or Treat" and "thank you" at each house when prompted. 

Now...on to Thanksgiving.  And then Christmas / Hanukkah.  Should be interesting, since he really is starting to understand these holidays now.  Should be fun.

Sunday, October 30, 2011

Busy Busy Busy

I feel like I have not posted a true blue post in a while. 

Life has been busy.  I am in my busy season at work.  Mike is also swamped at work.  Jonathan has been sick, on and off, for a week and half, including staying home from school and therapy a few times.  My Mom came to visit.  We had our progress review for Jonathan at WEAP.  And I ran my half marathon. 

Now with my training out of the way, I feel like I have a moment to breath.  But just a small moment.  We have Thanksgiving out of town ahead, and I have to prep for that.  But the good news is...my eye twitch that I had for almost two weeks is gone!  YAY!!!

I have to be honest.  It has been a pretty dark and rough October for me.  And I'm not saying this for sympathy in anyway, so please don't feel sorry for me.  My worries and issues are so minimal compared to others.  I've just had a hard time getting though it.  But I'm working on it.  And I have been really relishing the good moments with Jonathan.

- He can now count to 100. 

- We went to one of his classmate's birthday parties today, and when he saw her, he gave her (unprompted) the biggest, full on hug I have ever seen him give.

- When I asked him if he wanted to go to said birthday party or go home (prior to getting there), he said "Birthday party!"


- He helped carve a pumpkin with me.  He drew the eyes, nose and mouth ("First two eyes, then a nose, then a mouth!")  I had to laugh when I was cutting the top off and he said "Jonathan's turn!"

- He grabs the book I'm reading off my night stand every night, because the author's first name is Jonathan.  - And then he flips through all the pages.

- He tells us which Handy Manny episodes he wants "Handy Manny Victor!  Handy Manny Table for Two!"

- When he hears the microwave go off, he says, "Oh!  Facon for me!" He thinks he is getting bacon, no matter what is in the microwave.

- Sometimes he plays with his timer that they use for therapy.  And a few times it will go off and he will say something like, "Now it's time for Popsicle!"

- He has his first Kit Kat.  He ate one, came running back up to me and said, "I want more, please."  

- Tonight he wanted more candy, and Mike told him, "First dinner, and then candy."  Jonathan responded, "OK!  Time for dinner!"  It was 4:00 at the time.  He then climbed on a stool to get bread out of freezer so Mike could make him a PB &J for dinner.

Just writing those few things made me smile.  I think it's gonna be ok, no matter how busy and stressed I get.  I have to remember those little moments that make me smile (geez, that was sappy). 

Oh, and he is watching Handy Manny now, and just turned to me and said "Hola Mommy!"  Too funny.
Tomorrow is Halloween.  I'll be sure to update.  Not sure if his costume (surprise - Handy Manny) will be on or not, but I'll hold zero expectations.  That is usually when I'm the most surprised.

Thursday, October 27, 2011

These Kids Can Do Amazing Things

Jen and I have seen a few movies about autism and it really does open your eyes to the scope of the condition, what it means and how the world might be seen through the eyes of someone with Autism Spectrum Disorder. So once you get past the A-word, it's sometimes remarkable to see what they can do and how they process information.

Jonathan is obsessed with numbers. He now looks at digital clocks and watches and recites the numbers as they change. He counts to 100 with ease and does that a lot these days. He also has a similar obsession with the alphabet.

But yesterday as we had our every-two-month progress report at the Wisconsin Early Autism Project (WEAP), the group that oversees and works with Jonathan every day with intensive therapy, I couldn't believe some of the things Jonathan could do. Sometimes I sit in my office and hear lots of screaming, crying and resistance to therapy--and that doesn't always give me the best impression of ABA therapy. And Jen is the one of us who attends the weekly team meetings and sees Jonathan in action.

Yesterday I had the chance to see some of the programs they are employing, and it's remarkable what Jonathan is comprehending and processing--things like human feelings (they show a picture of someone smiling and he says "Happy!"). He knows words I didn't know he knew. And he learns incredibly fast. So really, since July when he began these programs, his progress has been nothing short of remarkable, and he can do some amazing things he couldn't do before.

So the WEAP therapy program, along with his awesome team at school, special ed and, well, here at home, are all working well. Do we have challenges? Of course we do, pretty much every day. But it sure is nice to see the fruits of labor sometimes to help us continue to move forward on this journey.

Saturday, October 15, 2011

Videos! - 2 of 2

And here is one from last night.  He was reading "Brown Bear, Brown Bear."  He keeps getting distracted by the TV, but the end is cute.
video

Videos! - 1 of 2

video
I thought I'd try to put some videos up of Jonathan. This one is with his number puzzle.

Friday, October 14, 2011

Single Parenting - Day 2 and now 3

We miss Daddy.  Bottom line.

But we're doing OK.  Last night was a bit rough.  Jonathan seems to be having some separation anxiety when it comes to going to bed.  He wants me to stay with him.  It was funny when I was leaving his room and he says, "Mommy goes downstairs.  Watches Handy Manny!"  Yes, that was exactly what I was going to go do ;) 

He's also been watching his digital clock in his room.  He now recognizes the numbers.  So he is having a hard time settling down at night, because he waits for the next minute to change.  He watches the clock and gets super excited.  So I tried laying with him last night, and he was saying "Nine!  Nine and Three!"  "Nine! Nine and Four!"  "Nine!  Nine and Five!"  He did eventually fall asleep.  But so crazy his obsession with numbers.  He has a number puzzle too, one through twenty. And he cannot put it together unless he counts to the next number, presents the number, and then counts up to that number again.  It is a long winded process getting to twenty. 

He is currently downstairs doing his therapy.  Lots of screaming today.  Oh, and he had an awesome tantrum at drop off at school this morning.  We were fine, and as I pulled the car into the parking lot, he yells, "DREIDEL!!"  He wanted one of his Hanukkah dreidels, which of course I didn't have!  Kicking, screaming and me having to carry him into his classroom ensued.  Then he was upset after we got in the school that blue car was parked by the window and not the light pole. He would just scream, "LIGHT POLE!  LIGHT POLE!"  I just could not read his mind and follow his rules this morning.  But I did get super big smiles at pick-up. :)

Daddy comes home tomorrow.  Hooray!  I think Jonathan misses him more than he is letting on.  I think I miss him just as much too.

Thursday, October 13, 2011

Single Parenting - Day 1

Mike and I do not tend to spend much time apart in terms of seperate travel.  And really, since Jonathan was born, I think the max has been two nights. 

So this week, I've got single parenting duty for THREE nights / four days. Mike is at a conference in Nashville.  Now I am not complaining.  We are very lucky that this is all that it is. I often think about those families where a parent is in the military and deployed.  Or those who don't have 2 parents.  I am very lucky.  I know this.

Since Mike takes care of the intensive therapy scheduling everyday...being the parent at home while he works, I had to really adjust my schedule.  Again, I'm very lucky to work for a company that will be flexiable with me, and let me work from home in the afternoons this week. 

So yesterday, after we explained that Daddy will be going on an airplane, and Mommy will pick up Jonathan at school, we were ready to go!  He was SO excited to see me yesterday when I picked him up.  However, on the way home, all he could say was "Go see Daddy!" 

He did well with therapy.  Since this was my first experience of being detached from what was going on, it was hard for me.  I wanted to go downstairs and play.  But I had to work...still on the clock!  Mike would explain that there were tough times too.  And boy, I heard it!  When the screaming started, I knew he was having a tantrum, and I couldn't do anything about it.  That would only show that screaming is OK for attention...and if you scream like that, Mommy will come.  So I stayed put.  Like a knife in the heart, I stayed put.  He got over whatever he was screaming about.  All was OK.

So I must have felt very productive after work and after therapy.  I cooked a dinner (if you know me, you know, I DO NOT COOK).  I did a load of laundry.  I made the next day's coffee.  Dished were done.  Watched some Handy Manny with my kid.  OK!  I can do this.

And then came bedtime.  I think Jonathan thought, since Daddy wasn't here, Mommy would go away too after he went to bed.  He was so so sad when I put him to bed.  I could hear him saying, "Mommy.  Right Here.  Sit!"   I did go back up, and like a leech, he would not let go.  I sat with him till he fell asleep.  It wasn't horrible, but not in the norm.

So while I was productive, and all went well, I still missed "Team Farley." 

And I'm exhausted today.  I don't know how single parents do it all the time.  I had to run to Target before I went to work, but after I dropped him off at school today.  I felt like I was running, rushing, and just trying to get it all done.  I guess when you're in the situation, you're in it. You get through it.  And another day will come.

Tonight, I am not cooking. 

Sunday, October 9, 2011

Zoo!

One of the many things I love about Madison is the free zoo.   It is free. It is low-key.  And it is not too far from my house.  So at the last minute, I asked Jonathan if he wanted to see some animals, yes or no.  He said, "YES!"

So the two of us jump into blue car on a hot, 80 degree, October Sunday.  When we get there, I asked, "Jonathan.  Walk or stroller?"  and he said, "stroller."  I like that he was able to tell me what he wanted. 

Previous times I have taken him to this and other zoos, he is usually zoned out.  He does not react or point to the animals.  He treated the visits like a walk.  He would not make eye-contact and was usually in his own world.  Not this time! 

We saw the giraffes.  I pulled up, got down to his level and said, "What do you see?"  He said "Giraffes!"  So we looked at them, commented on their long necks, counted them (2).  Then he said, "Walk."  He was ready to move on. 

When we got to the brown bear, I picked him up, because the bear was sort of hidden.  I knew he saw the bear, because I heard him giggling a bit.  Then, "Bear.  Hi Brown Bear!" 

We saw the lions, alligator and bison.  We took a ride on the train and carousel.  This kid was being so so so good!  After the train ride, he said, "Go home.  See Daddy."  Nice job again of telling me what he wanted.

We got to the car.  I turned around and said, "Jonathan, I am so proud of what a good boy you were."  He totally smiled with pride.  And then he have me a high-five. 

It was such a nice, impromptu outing.  And so low-pressure.  Our trip lasted about an hour and half.  It was great.

Now on to a challenging week ahead.  Mike has a conference for most of the week, so I will get to try my hand at single-parenthood.  I'm a little nervous, and I'm sure there will be tears.  But I know we'll get through it.

Sunday, October 2, 2011

J and Pepper: A Love Story

Let me start by saying I'm not a cat person.  We had dogs growing up.  I like dogs.  Mike and I did not have a pet as a couple for various reasons.
Along came Pepper.

I'll back up a bit.  Jonathan would follow kitties around at friend's homes.  His favorite cartoon, Caillou, has a cat, named Gilbert.  He always called out cats if he saw them.  It was very apparent, my son was a cat person.
In January of this year, we went as a family to the Humane Society.  I had been looking on-line, and knew we should go there.
All of the cats were either a bit older or did not fit in to our criteria (being patient with a child being the main one).  There was one kitten, and the kind volunteer there suggested we meet her.  Her name was Squeaky.  We all went to the back, private room to get to know her.  Immediately, Jonathan pulled her tail.  I thought, forget it.  This is not going to work out.  As we were sitting there talking, Jonathan crawled into the cat tower tube.  All of a sudden, the kitten jumped on top of the tower, and started batting at Jonathan.  They were playing!  He crawled out, grabbed little ball and threw it to her.  She ran after it.  Then, he suddenly said, "Gilbert!"  Mike and I looked at each other.  We knew we were taking this one home.

 My Favorite Picture of the Two of Them


He loves her!

Buddies Gotta Nap!

On the first day we got her.  She is MUCH fatter now.


Fast forward 9 months later.  Squeaky became Pepper.  A day does not go by where Jonathan doesn't say "Go home, see Pepper!"  "Pepper's eating!"  "Pepper's sleeping!"

Just today, Pepper was sleeping under our bed.  Jonathan started wandering around saying, "Pepper, where are you?  Where is Pepper?"  He found her and said, "Pepper! There you are.  Come here!"

She is truly his friend.

I should also mention, she follows Mike around like a shadow.  She knows who feeds her.  Come to think of it, I think I do the same thing...follow Mike around like a shadow.  What? He feeds me too.  haha!

We're glad we have Pepper. I guess we're all cat people now.  And I love that Jonathan is communicating directly to her.

Monday, September 26, 2011

Stress Free Errands

This past Saturday, Jen was going for a long run (she is training for a half-marathon) and so I was going to do the grocery shopping with Jonathan. Lately this has been a chore when we all do it as a family, so I wasn't sure how this would go--especially since we had three stops. We had to pick up a box of vegetables at a private residence from our CSA, go to Trader Joe's and then to Copp's, and since Jen was not with us, I had to get Jonathan out of the car for the CSA box. We went into the holding area of the house where the boxes are, took ours, and Jonathan helped me by carrying the CSA newsletter. So far so good. Of course, I had been prepping him by saying "pick up vegetables, Trader Joe's, then Copps."

I decided I needed coffee badly to continue this mission, anticipating a few meltdowns along the way. I stopped at a PDQ and figured it would be okay to make an extra stop if I also bought him a cookie. Yes, it's bribery, and maybe it's bad parenting, but you have to go to extremes sometimes when having an autistic child to avoid a prolonged meltdown. Mission accomplished, by the way--he held his cookie tightly all the way to Trader Joe's. He then let me put him in the shopping cart, which he doesn't always do. He ate his cookie. He wanted me to buy the gallon of milk, but I somehow didn't let a temporary disagreement deter me--I put the half-gallon in the seat next to him, then got an apple juice to put on the other side of Jonathan. He was happy, and he was fine through the checkout process.

Then it was on to Copp's, where we buy the rest of our groceries, including usually the other milks--one that we drink, the organic one; and one for Jonathan to put on the corner of the kitchen table--notably, the one with the yellow label, just like they use as school. He calls this "yellow" and going to the store means buying a half gallon of "yellow." Anyway, he usually flips out going up and down the aisles, until you get to the milk area. So I did the smart thing--we went straight to the milk area. Of course, Jonathan wanted nothing but the gallon of "yellow" and so now we have that (we dump them out each week after they sit for hours on the corner of our table--and keep it tightly sealed) as well as the one we drink, as well as an extra half-gallon from Trader Joe's. Yes, the milk is an issue we are working through, but it's something we are just allowing right now, a few dollars a week for something that keeps Jonathan happy.

Anyway, speaking of happy, he was very happy through the entire shopping experience at Copp's too. In all, we're talking over two hours of father/son time with no major meltdowns. I was expecting there to be issues, and thought I'd be pleasantly surprised if there weren't any--there weren't. As with every little victory when you have a child with a disability like autism, you look for little victories at a time, and try to celebrate them and build on them. And quality father/son time, even for something simple as going grocery shopping, is definitely a little victory.

Oh, and a bonus--he wanted to listen to the Mike Farley Band's Halfaworldaway album while we were running around town, and at one point he shouted out "Daddy's music!" That's cool for two reasons--I can hear my own songs through the ears of our son (because I've otherwise heard them a million times); and two, it is less time listening to Elmo or Handy Manny!

Sunday, September 25, 2011

An uneventful week :)

We've had a pretty un-eventful week here.  Just the way I like it.  Jonathan still working hard on controlling his environment ...example: a tantrum if we pull the car into the garage.  That was the biggest catalyse over the weekend.

But he asked to go to the library yesterday.
"Go Library.  Blue car.  See trains." 
We went and he played with EVERYTHING, except the trains on the train table.  Ahh irony. 

He reported that the sun was up at 7am today.  This after being up since 5:30.  But he was very excited about "SUN!"  Me?  Not so much.

Oh, and while watching Handy Manny, his latest fav, he's been laughing and repeating a lot of the lines.  But once in a while, he'll say, "Hi Kelly!  I'm Jonathan!" 

And he's been watching an Elmo's world about books.  Mr. Noodle (Jonathan's FAV!) reads a book upside-down and has reading glasses on.  The other day, I was in the basement getting the laundry.  Mike was mowing the lawn.  As I was walking upstairs, it was oddly quiet.  A sure sign something was wrong.  I start yelling, "Jonathan! Jonathan!"  He surely went outside without me.  He's probably running in the street. What if he gets hit by a car?!  "Jonathan!  Jonathan!"  I'm looking around.  Not at the table.  Not outside, as I look out the window.  And then I look right in front of me.  He's sitting on the couch with a pair of sunglasses on holding a book upside-down with a little grin.  He was being Mr. Noodle.  And he was waiting for me to notice him.  I laughed.  He laughed.  It was really funny.  I wish I had a picture. 

I do have a picture of this...  He's playing hide and seek with his Handy Manny tools. 


"Felipe!  Where are you?  Squeeze!  Where are you?"  He's hiding them under the sleeping bag.  :) 
Like I said, just another uneventful day here.  We're just playing. 

Monday, September 19, 2011

Time to just be Mike and Jen

There is a pretty scary statistic out there stating the rate of divorce between parents of children with Autism is greater than those without.  I've also seen reports debunking this.  Whatever the case, parenting a child is hard. And marriage is hard work too.  And despite all that is hard about it, throw in Autism, and the waters can get a bit rougher. 

I recognize it is hard.  I recognize that I may not always be the best wife.  Hell, I may not always be the best mother for that matter.  And to say this year hasen't been trying on our marriage would be a lie.

But we still love each other.  A lot.

So we took a trip.  We are lucky to have a wonderful babysitter and friend who loves our son.  She watched him over the weekend.  (They had a blast).  In the meantime, my date picked me up after work on Friday, and we high-tailed it to Chicago.

Did we see shows, museums, the sites?  No.  We ate.  We went to multiple restaurants (The Purple Pig, Frontera Grill and Graham Elliot), walked Michigan Ave, took a nap, and just enjoyed being together.  And I feel like every other sentence out of my mouth was, "I'm so glad we did this." 
Update: Here are the links to Mike's blogs about our meals:
The Purple Pig
Frontera Grill
Graham Elliot

Moral of the story?  Marriage is hard.  Parenting is hard.  Autism is hard.  We've got a lot of obstacles in front of us.  But we're still the same people deep down that saw each other from across a room, eyes locked, heart beating fast, all noise blocked out....I looked at him and never looked back.  And I'm glad we had a refresher weekend to remember that.  We needed it.  We needed the time together to just be Mike and Jen.

Sunday, September 11, 2011

Did I say Square One?

(Spoiler alert.  I will be discussing poop and poop related events)
aaannnd then there was frustration. 

With all the wonderful victories I mentioned previous, we had an incident today that brought me back to reality.
1 word. 
Poopcasso.
That is what we call it when Jonathan has a BM, and then smears it all over the place.  He has not done that in a long time.  He did it today.  I wasn't home.  Mike as here with him.  When I got home, Mike told me what happened, already had clothes in the wash and had given Jonathan a bath.  I noticed remnants in Jonathan's hair.  He promptly had another bath.

Mike and I are both tired of this.  Tired of the pull-ups.  Tired of clean-up.  Just spent.   

Saturday, September 10, 2011

Small Victories

Jonathan's speech has been increasing by leaps and bounds.  And while it has mostly been the scripting of Caillou episodes ("I like apple pie!  I like apple jelly, on toast!" - his fav of the week), I feel like this week we've had some small victories in back and forth communication.  I'm not going to get overly excited, just pretty satisifed for a moment, which really, I can't ask for much more.

Here are some examples:
We were going to school, and the car was outside of the garage.  I opened the door to the garage and Jonathan peeked in.  He looked at me and said:
"Where is blue car? Blue Car!  Where are youuuuu?"

At school, his teacher reported they have been working with the kids on serving their own food and passing it to their friends at lunch.  She said she heard Jonathan say:
"Here, Landon.  Have some fruit."  "Here Mya, have some vegetables."
I WAS FLOORED!  Did he really acknowledge another child by name?!

His special ed teacher said she saw Jonathan go up to a kid who was visiably upset, look at him in the face to double-check his facial expression, and then touched him on the arm.  She felt it was a sign of Jonathan showing empathy.  Empathy?!?!  I have literally sat in front of Jonathan, crying my eyes out, and he would just look at me and laugh, or not react at all.  I will take empathy!

Jonathan also was really interested in a book that has pictures of other kids doing various facial expressions, each matching a letter of the Alphabet.  He carried the book around for 2 days, and contantly wanted me to label the faces the kids were making.  I brought it up to the therapists, and hope they jump on that interest.  Reading facial and social cues is something a lot of Autism kids have a hard time doing. 

Oh, and when I said good night to him last night, after I put up his baby gate (otherwise we would be running back and forth out of the room all night), Jonathan was upset I was leaving.  He then said, "I do not like this."  I did a double take on that one.  Oh, and he just ran into the room 2 seconds ago and knocked his hand on the wall.  He said "I am hurting."  This coming from the kid who had an in-grown toe nail and never made a peep.  (He is ok by the way.  I did stop writing and gave him kisses.)

Last but not least, we had some OK drop-off at school this week.  He would dawdle a bit, and would whine if I picked him up to get moving, but no real tantrum. Then on Friday....ahh, blessed Friday...he ran right into the room and started playing.  I even had to park in a different spot, and he was fine with that!!  No tantrums, no dawdle, no whining. Relief.  His teachers sent some cute pictures, and I have to share. 
 Looking at books.  My little book-worm
 Stamping my name
 Playing playdoh next to friends!
 When did he get so big?!
In the meantime, I'm going to keep celebrating the small victories, because I know the next challenge is around the corner.  It is like when you have a newborn, and you think you have a good sleep routine down, inevitably something changes, and you're back to square one.  I don't dread the return of square one.  I'm being realistic in knowing it will be back. But now, we're good.  We really are.

Wednesday, September 7, 2011

My Son, the Neighborhood Streaker

"Pants off."
"Shirt off."

This is being heard more and more at my house, and it ain't me or Mike! 
And when we're inside, I don't mind.  But sometimes it happens when we're outside, at dinner, shopping, school, you name it.  My son is a stripper.

Recently he does not like to get wet or dirty.  Not one drop.  A splash of ketchup =  no pants.  Just wash your hands = no shirt. 





Who needs clothes when I have these stickers?

This morning, he literally climbed up on the counter (we have a Learning Tower there, so he can be even level to the countertops in the kitchen) and started taking his pants and diaper off.  This past weekend he took his pants off in our neighbor's drive-way.   

Now I know "typical kids" do this too.  And right now, it is hilarious.   I'm choosing to laugh, as I carry him off to change.  It's a good thing he's cute. 


You can even garden without pants!

"I cook naked.  I clean naked.  Naked, naked, naked!" - as quoted by Elaine from Seinfeld

Tuesday, September 6, 2011

Jonathan and his Posse

I've often wondered what the neighbors are thinking when they see 5 women in their early 20's leaving my house.  Or what they think when they see them coming and going separately at various hours during the day.  Mike does work from home...what is going on there??  On neighbor asked me about all the UPS deliveries, but I don't think she had enough guts to ask me about the women. 

Ahhh, in-home therapy.  So glamorous!

I mentioned, Jonathan now is receiving ABA Therapy through the Wisconsin Early Autism Project (WEAP).  He has one-on-one therapy for about 25+ hours a week, on top of going to school in the morning.  He will also start speech, occupational and special ed therapy at school, which he had last year.  But now he has the one-on-one at home now too.

We have 3 or 4 line therapists, mostly recent college grads.  We also have a senior therapist, clinical director, and clinical supervisor.  (I'm already looking for thrifty Christmas gifts to get everyone.)  These people are coming and going from my house all the time.  We also have weekly meetings, bi-monthly meetings, and a re-evaluations every 6 months.  (I'm exhausted just writing this.)

How has Jonathan reacted?  He likes therapy. He has funny inside jokes with each one, and eagerly greets them when they arrive at the house. He get rewards. ABA really values positive reinforcement.  He does great at the academic part.  He has a hard time at the playtime choices.  His days are very structured, which has provided GREAT challenges. 

He currently does anything and everything he can to control his environment.  He wants the lights off, he wants the lights on.  He flips the switches.  He wants the milk (yellow milk) out and placed in a very specific area on the table.  He wants the door locked.  He wants the door open.  You never know what he wants, but if it is not the way HE wants it...tantrum time!  Since WEAP started, I feel like he's become more autistic, or at least demonstrating more autistic behaviors.



Yellow Milk in it's proper place

This may be part of the process.  He may be flexing his muscles here.  But he is verbalizing and telling us wants and needs more.  There's that silver-lining!  But he is interacting...small victories.  Small victories.

Monday, September 5, 2011

Dad's Point of View

I'm glad Jen decided to create this blog. I know we've talked about it for a while, and I think it can be a great release for us to discuss how we feel about Jonathan with the world, and let everyone read about it on their terms. And part of the reason for that is, it's uncomfortable to talk about with others. On the one hand, you want your kid to blend in and make him and us parents to feel like nothing is wrong. On the other hand, you feel the need to tell them that our kid is different so that if he does or says something that seems odd to them, they will understand why. But doing so also puts them in a weird position--because it's almost like you're dumping it on them, and therefore making them have to respond to it. It's a fine line in every direction.

And I'll be honest, it's hard sometimes when you see kids doing things at age 2 than Jonathan is starting to do at age 4. At the same time, I wouldn't trade this situation for anything. Jonathan is the most loving, affectionate kid. He laughs a lot, he's fun to be around (most of the time...but all kids have their moments), and he's extremely extremely intelligent. We get to learn about autism through him directly and teach those around us about it, and in some tiny way it's one contribution our family is giving to the universe.

By no means am I saying it's easy, because it's absolutely not. Doing things that most folks take for granted are often a huge chore for us, like going to the store or going on vacation--but we have to adjust our expectations and prepare as much as we can in advance. Jen is a master at this, and frankly she works her butt off to try to make every day with Jonathan manageable. On that note, I will also say that it's important to learn as much as we can through books, movies and support as possible--but this is where my wife and I also differ a bit. She tries to soak up as much information as possible and spends countless hours doing so, while I try to offset my learning about autism with time to clear my head--that doesn't mean I want to ignore it, but I think it's also important to have some diversions as well. That's where moms and dads differ sometimes when it comes to having a child with a disability, but also why we make good teams as parents. It's also why I'll enjoy giving you my perspective, and giving a perspective that I think a lot of dads like me will be able to relate to.

Thanks for being part of the journey with us!

Happy Birthday

Jonathan turned 4 a few weeks ago.  And while I mourn the realization that I no longer have a baby, Mike and I also lamented what to do for his birthday.  This year, Jonathan was invited to numerous birthday parties for his preschool friends.  And we went to as many as we could.  I can never say no to a party.  But also, I don't know how much longer Jonathan will get these invitations.  Jonathan has a hard time interacting with his peers, there is only so much another, say "typical kid," can take of being ignored when they say "Hi" to him.  So for now, we'll go to the parties, knowing he was invited because the whole class was invited. 

The first birthday party we went to was at an indoor playground.  Jonathan ran in with excitement.  5 minutes later, he had a look of horror on his face and was headed for the door.  It was too loud, too much going on, too much stimulation.  So we hung out by the door, while the other kids swung on the ropes, open gifts, and ran around.  (He did go to the table for cake.  I mean...it's cake!)  I was upset.  I think I came with the expectation that Jonathan would run around with his friends and I could nonchalantly chat with the other parent about celebrity gossip and when to sign the kids up for soccer.  I should have known better.  The party was a slap in my face that Jonathan was not like the other kids.  I've been working full-time, so it had been a while since I'd seen him with others.  We sat in the front, and another parent came up to me to see how we were doing.  I cried.  I couldn't help it.  I should have known better...don't put expectations on anything when it comes to Jonathan.

So with his own birthday coming, we were not sure if we should do an "invite all the preschoolers" party or just a more low-key cook-out with our friends.  Knowing that Jonathan would not open gifts in front of others, or probably even interact with his guests, we opted for the later.  But we did decide to get a bouncy castle.  Our backyard is huge and it would provide big distraction that our friends' kids could play in, and if Jonathan wanted to, he could play in.
  The result....BIG HIT.  The castle went up an hour before the party.  Jonathan got some one-on-one time in there.  When our friends arrived, with a handful of kids in tow, Jonathan would run out, play for a bit, and run back in to watch TV.  It was interaction on his terms.  No expectations.  Perfect.

We also had a birthday cake.  Mike picked it up before the cook-out started.  Jonathan saw it, and wanted some immediately.  I took the cake over to our neighbors, as it couldn't fit in the fridge.  Jonathan was upset.  He wanted the cake.  I carried him home to get ready after dropping the cake off next-door.  5 minutes later, I heard the front door slam, and saw Jonathan, fork in hand, headed to our neighbors.  That was determination!  OK...no expectation, right?  I got the cake back, cut him a slice before anyone arrived, and he was happy.
We may not have sung "Happy Birthday" to him this year, but I don't think it really mattered.  Now the big dilemma is how to top a bouncy castle in your back-yard next year. 

Sunday, September 4, 2011

Merry Christmas, Elmo!

First off, I am overwhelmed by the comments of love and support about the blog.  I once told Mike, that despite all the recent awareness of Autism and the increased diagnosis, it still very much feels lonely and isolating. And if you know me, I am anything but lonely and isolating!  It is so hard to go out and find support networks when you feel like you're in survival mode.  But I'm sure we'll get there.

Sunday morning.  8am in September.  We're watching "Happy Holidays, Elmo."  It is Jonathan's favorite movie we have on the DVR.  We've been watching it since we taped it in December.  I'm hoping this coming holiday season, he will be really into it.  It's like we've been prepping all year.  Ocassionaly, our menorah for Hanukkah is Jonathan's "lovie."  He'll bring it to school with him, place it on his nap mat or just hold it all day. 

When he was little, his first odd lovie was a plastic egg.  Then we moved on to the butter spray.  Tons of books, photographs (of Mommy and Daddy holding objects. An attempt at making flash cards he would like.  He just wanted to hold them).  Oh, and don't forget the Thomas the Train PJ, size 2T.  He would carry those around, and still sometimes demands on wearing them. 

I don't understand or know where he gets his affinity to these objects, nor do I really care.  It just makes me laugh.  I have a feeling the Toy Story toothbrush we got at the dentist is next up.  He won't let me put it in bathroom where we brush our teeth.  It is currently sitting on the coffee table.

And since we've watched the Elmo Holiday movie so many times, I expect we may need t start celebrating Kwanza this year too.  We already do Christmas and Hanukkah.  Who knows what Jonathan has in mind for us. 

Saturday, September 3, 2011

Just Another Autism Blog

Hi!
I've started this blog mostly as a release for my family and me. It is our story, that unfortunately waaay too many families may relate to. But this is us. I'm putting us out there. There may be funny stories, real and raw feelings, struggles and love.

I'm Jen, mother of 1 amazing boy (Jonathan). Wife to a supportive and wonderful husband (Mike). Full-time employee, part-time runner, recent triathlete, former lifetimer with Weight Watchers, friend to many, daughter and sister to a few. Living in Madison, WI, by way of Nashville, TN, by way of Cleveland, OH. Grew up in Cleveland, which will always be home.

My husband and I married in 2003. Moved to Nashville. Welcomed our baby boy August, 2007. We had wanted a baby for a long time, and had our struggles to get there. But my pregnancy and those sleepless newborn days were wonderful when it all happened.

And since this really is a blog about Autism, I guess I should just dive into that.

Jonathan didn't speak. He babbled. At 18 months, he was evaluated by Tennessee Early Intervention System (TEIS). Since he did understand what was being said to him (receptive communication), he was not eligible for services. At 2 yrs, still not talking. Our ped said he didn't want to get "burned" and wanted Jonathan re-evaluated. This time he was eligible. We started services with TEIS shortly there after. Speech therapy, Early Intervention specialist, gymnastics and the "mother's day out" 2 days a week....his schedule blew up.

It was around this time that we decided to move back to the Mid-west. Madison was where we picked. It seemed like a great place to raise a family. With our house on the market, sold, trip to Madison, house purchased, amazingly a job for me secured, full-time day care set...we were ready.

A week before our BIG move, one of Jonathan's speech therapists handed my a piece of paper. In the months that she had been working with him, his verbal language had not improved. I had seen the paper sitting on a table. It said "Signs of Autism" on it. I kept thinking, "this is not for me, this is not for me." Sure enough, she handed it to me, saying "I've worked with a lot of kids, and think this might be something you need to consider. I needed to at least let you know what I thought, and had to give you this." As much as I tried to appreciate this "going away" gift, I was crushed. I cried right there, and probably all the way home. I knew it...deep down. But was not ready to accept it. I had seen Jonathan with his peers. I knew he was different. I tried not to compare, but how can you not?! He couldn't say Mama. Grunted or lead us to what he wanted. Was a terrific independent player to a fault. Had NO INTEREST in other kids. When he was upset, he'd bite, kick or scratch. But he was the most loving, sweetest boy ever. I was never without hug and kisses. He showed affection...he couldn't have Autism...right?

We made our move. Jonathan found a strong affinity to our blue car. We chalked it up to his only constant in a sea of change. I had already started the process to work with Birth to Three in Wisconsin. Put him in full-time day care, and a speech therapist would see him there a few times a week. He was still being aggressive when he was upset. We got SO MANY incident reports in those first few months. Kids would run away from him because all they knew was that Jonathan would hit them.

We started the process to see a Developmental Pediatrician. We also had started the process for services through the public school, which happens at the age of 3. This is around the time where we learned Madison has a high number of kids with Individualized Education Plans (IEP) and a high rate of Autism...because the care and services here are SO great. We had no idea. Jonathan was diagnosed educationally under the Autism umbrella in August, around his 3rd birthday. We had him evaluated with the Wisconsin Early Autism Project (WEAP), where he was also diagnosed in February...and then finally, after a 9+month wait to see the Developmental Ped at the Waisman Center, we had the medical diagnosis in April of 2011. Labeled with "autistic disorder" this heartbreaking label now let us move forward to get him help.

I should mention...he had made TREMENDOUS progress during this waiting, testing, and evaluating year. He had a new preschool teacher, who saw the kids running away from him. She made sure the other kids understood that Jonathan is our friend, and we don't run from friends. Another teacher taught Jonathan the sign for "please" which ended up being his first true word spoken (the occasional "Dada", "door" and "ball" were heard...but "please" was said correctly.) While working with the new teachers, specialists from the school district, as well as the us participating in a study on speech and language at the University, Jonathan started labeling and using 2 to 3 word sentences.

So here we are. We've started working with WEAP for ABA (Applied Behavior Analysis) therapy, which I'll talk about later. Jonathan turned 4. We struggle everyday. He is speaking more, but still has problems. We're still working on potty training...currently unsuccessfully. He is always trying to control his environment, tantrums often, and scripts (repeats back) episodes of his favorite cartoons. He cannot have a true back-and-forth conversation or answer "yes" or "no" questions.

I could keep going...but I think I'll save more for later.

I still cry....usually at the drop of a hat. But at least I can usually get through a conversation about Autism and our family without the Kleenex.

We didn't ask for Autism. But this is what we were given. I know some people say that these things can eventually become a gift...and I'm still waiting to feel that way. I don't want to "cure" Jonathan. He is who he is. But as a Mother, I want to help him not be so tortured and held by his Autism.

Anyway....this is just us. Just Another Autism Blog...another story of a family in a sea of way too many families that struggle with Autism.