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. 
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'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! 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

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.