Friday, May 18, 2018

I sometimes forget....

It’s been a while since my last post.  Honestly, I just haven’t felt the need to write.  Our little Autism journey still exists, but like with anything, it isn’t so different to us anymore.  It’s normal life.  It’s what we do. 

Our boy is 10 years old now.  Heading into his last year of elementary school.  He no longer has intensive therapy.  He is in a mainstreamed class in school.  He goes to religious school, takes drum lessons and has fallen in love with you-tube videos.  Normal 10 year kid, right?

So why did yesterday hurt so bad?  I went to his school for an observation.  An opportunity to see him in his school environment, make sure that he is receiving the best services for his IEP (Individualized Education Program).  He blended right in among his peers.  But I saw it. 

I saw it when he demanded that his teacher set the timer that he brought into school during math time.  And since math was a little different that day because of an assessment, he wandered around the room, a little lost and not sure what to do about the timer.  It took his teachers three times to redirect him to be able to get to work and not focus on the timer.

I saw it when the teacher said math was over, and he yelled out, “No it isn’t!  The timer didn’t go off. “  The teacher gave him a kind smile and went with it, asking kids to start wrapping it up instead.

I saw it when he was sitting in his large classroom, mind wandering, not really paying attention and just copying the image the teacher drew as an example in science class. 

I saw it when he was directed to work with peers, and they were talking and trying to work on a problem together.  He was too busy looking at the time to be sure everything was on schedule. 

I saw it when I watched other kids interacting with each other.  Joking, teasing, dancing, being silly together.  There were a few that would call out my kid’s name to say bye on the way out.  But it wasn’t the same.  Another kid has our same last name.  I heard someone ask if he and my boy were related.  This kid was embarrassed and yelled “no!”  Typical kid stuff, yes?  A little raw to me?  Even more so.

My son still loves his preschool shows and characters.  He loves his light poles from a busy street near our home, and carries around a deck of photos of screenshots he took of the street.   The books he is reading are about two grade levels below what the other kids are reading.   And I don’t mean to compare.  I’m just usually not in that situation to see it so upfront.  To feel it so sensitively.

I know he’s special.  I know his talents shine in other ways.   I know he’s not like all the other kids.  It’s just that sometimes I forget that other kids are not like him. 

Thursday, July 14, 2016

The Graduate

Five years.

It's been five years since we began a reluctant (but very much necessary) journey with Jonathan to help him assimilate to everyday life while on the spectrum.  And if you would have told me that five years from then our boy would be "graduating" from the program, reveling in being the center of attention, yapping constantly for two hours, and appreciating everyone that was there in his own personal way--there is no way I'd have believed you.

Yet that is what happened yesterday.

Our journey, as is the case with most along the autism spectrum, has been a roller coaster ride.  Five years ago Jonathan was barely verbal and he communicated mostly by pinching anyone who didn't give him his way.  He wasn't potty trained and we didn't have a clue how we'd be teaching him that with a communication barrier.  He had some epic meltdowns in public and in private.

Yet Jonathan has always had a loving side too, and Jen and I and his WEAP (Wisconsin Early Autism Project) team wanted to coax as much of that out as possible.  Yesterday it was evident that that particular mission had been accomplished--but it was so much more.  No coaxing was necessary when it was all fueled by a boy's genuine excitement and sense of pride at graduating the program.  It was Jonathan showing love for his friends and teachers, but on top of that he was the life of the party, something we would never have believed could happen back in 2011.

Many of his therapists (aka "big friends") were there, including Stephanie, his first senior; Ali and Katie, his first line therapists; Jevin, his most recent senior; Chelsea, the "friends club" leader; Jenna, Caleb, and Caitlin--the more recent line therapists.  His first/second grade teaching team of Ms. Bradley, Mrs. Carden and Mrs. Olander were there, and they have had an enormous impact on Jonathan as well--treating him like every other student and yet still giving him the personal attention he needs.

When we came to the realization that Jonathan was ready to move on to the next chapter in his journey, it felt like the universe looked at him, looked at us and gave our family a wink, a nod and a giant thumbs up.  The WEAP team was gracious, proud and accommodating, and suggested that we have this graduation ceremony.  Jevin made him a diploma, and Jonathan gave a speech (much of it was Sesame Street scripting, but he was still fearless).

We know this is just a stop on the journey.  But it's one we can stop at, look around and be incredibly thankful to everyone that has shaped our boy into the awesome little person he's become.  We can look forward with much less apprehension and much more excitement.  We are humbled and appreciative.  But mostly, we are proud of our son and all that he's accomplished so far.

Sunday, January 24, 2016

Career Aspirations

"When I grow up I want to be Santa Claus.  And I will give presents to all the boys and girls.  And my bedtime on Christmas Eve will be at 6am in the morning.  And I will not die, because Santa does not die."

2014 Santa photo with the family. An oldie pic, but a goodie

That is a lofty career aspiration from my eight year old.  But if he wants to be Santa, I have no doubt that he will be Santa.

He has also wanted to be a yoga instructor, a Doctor, and now most recently, a Dentist.

This past week, he had a dental check up.  He has been going to a Dentist since he was two years old. We have made concessions for him in order to be a positive experience.  In therapy we played Dentist for a month straight before an appointment.  At his appointments, he would cry, scream, and kick.  But of recent he has really gotten the hang of it.

This last visit, he was a rockstar.  A dental patient rockstar.  (there has to be such a thing, right?)

We arrived at 4.  He knew the office closed at 4:30.  When he was called back, he said to the Hygienist, "I'm your last customer of the day!"  He chatted it up with the her.  Talking about the blue cupcake he ate at school for his friend's birthday.  He asked her about her work schedule and if she worked everyday.  At one point she said, "OK Jonathan.  You need to stop talking so I can brush your teeth."

During his check up, he said, "Um Nurse.  There is something I should tell you.  I need pictures of my teeth." The kid was ASKING for x-rays.  So she obliged.  She suggested we do a panoramic x-ray.  And he did great listening and staying still while they did the x-ray.  When the results came back to the computer, he asked me if we could take a picture of it.  He also was really into all the notes she took.  He even got to give me an "exam."

His X-ray.  Kinda freaky

Learning the documentation program early 
So while he was making the Hygienist laugh with his inquisitive and funny dialog, the big man arrived.  The Dentist.

"Dr. T!  I'm so happy to see you.  How was your Christmas?  I got a Lego Fire Transporter!"
Dr T. laughed.  He has been seeing Jonathan for a while  I think he likes the kid.

When Jonathan asked his birthday and license plate number, it was no problem.  They even went to a window to take a picture of his car.  When Jonathan mentioned it was after 4:30, and the office was closed, the Dentist laughed and told Jonathan that sometimes they need to work a little bit over.  And that was OK.  Lastly, Jonathan wanted to make sure he got a picture with his favorite Dentist.  Jonathan said "I want to be like you."

Two Rockstars in one picture!

It was one of the most positive dental experiences.  And the kid was so excited all day to go there.  This was a perfect appointment; years in the making.

I am so proud.  I'm sure this is how Santa's mother feels too.

Thursday, December 31, 2015

What Will the New Year Bring?

When my son was first diagnosed, one of our therapists put me in touch with another Mom who was further into their journey than we were.  It was an opportunity to connect with someone that once stood in my shoes.  They were also well into the ABA therapy program that we were looking into.   I was raw and sad.  I didn't know what to expect.  I didn't know what to ask.  I just knew I needed help and understanding from someone that had been there.

It was a nice meeting in a coffee shop.  I don't think I cried, which at the time was a huge accomplishment.  We talked about therapy.  We talked about other networks to connect with Autism families.  But one thing that that stood out to me was she wasn't sure when she should tell her son he had Autism.  He was doing well.  He was mainstreamed in school, played soccer on the weekend, and overcame a lot of his earlier struggles.   But her biggest worry at the time was explaining to her son he was different and labeled.

At the time I could not relate to that problem.  My son wasn't talking at all!  Having to explain to him what autism was seemed liked a daydream.

That was over four years ago.

Now I find myself on the other side of the coffee table.
I'm being called and asked questions about therapy, what worked for us, and to be the person that once stood in their shoes.  And I'm honestly flattered that other people are asking me the questions I had when I felt so alone.

Except our journey continues.  We are just at a different crossroads further along the path.  And now I wonder... when will I have to explain what Autism is to my son?  I think that day may be soon.

Our therapy looks so different than what it looked like when we started.  And we've started to adjust to JJ's needs.  Instead of "table times" and learning to speak, he needs more play dates and peer play.  He still struggles socially with peers.  But he is getting so much better with it.

And it makes me wonder what lies ahead.  How will middle school and high school be for him?  Will he continue to have friendships?  Will he find a sport, music or art form that he becomes passionate about?  Will he ever learn to ride a two-wheeler?  Where will he go to college (because I KNOW that will happen for him).  Will he always live with us?  Will he always want to?  What will he be when he grows up?

And guess what.... these are questions ALL parents ask themselves for their children.  Not just Autism parents.  When did we get here?   When did the tables turn?  It all seems like a blur.

So while this year comes to a close, I wonder what the New Year will bring for our boy, for our family, and selfishly, for me.  I hope that other families continue to feel comfortable to continue calling us... because one day they too will be on the other side.  And it feels good knowing I can be a small part in their journey, just as others have played a small part in ours.

Happy New Year All!

Saturday, September 12, 2015

Still Just Another Autism Blog

It has been since 2014 since I last wrote a post.
Not intentional.  Just haven't felt like writing.

But thanks to Facebook, I've been receiving "memories."  My posts on that day every year previous.
I've had this blog for 4 years.  What an amazing reminder.

I remember the first time I posted.  I was so sad.  Scared.  Relieved.  Excited.  Thankful.
I posted it to Facebook and refreshed my notifications every few minutes.  Each person that reached out, liked or shared literally made me cry.
Mike came home from the store that morning to me, sitting at the kitchen table, sobbing.
"What's wrong?!"  He thought someone died.
"I wrote a blog."
I felt like I was coming out... my first official announcement of our diagnosis.  We were living with special needs.  Andwe were not alone.

Here we am, 4 years later.  9 months since the last blog post.  We still struggle.  We still cry.
But oh how far we've come.

We are in the throws of elementary school.
Therapy looks like play time.  Playdates with friends and neighbors, although supervised and sometimes regimented, are on the regular.
JJ talks, engages, asks questions, states his feelings and so much more.  He is more flexible in routine, plans and rules than ever.
New challenges have popped up along the way.  Not every day is easy.  But easier days are more frequent.
This is life.  This is normal.

We are still Just Another Autism Blog.

I am me!

Tuesday, December 30, 2014

My Baby's First Haircut

On an unassuming Tuesday afternoon in late December, I cried at the hair salon. It was a day that took years in the making.  It was a day that seriously put me at a loss for words.

My son got a haircut at a hair salon.

Let's rewind to 2010, when he was 2 years old. I took him to get a haircut at one of those chain places. He kicked the poor girl.  He cried and screamed so loud that patrons left.  And it was so long ago, I think he may have gotten nicked with the scissors on his ear.  But I could be making that up.

Regardless, he refused to get his hair cut.  Eventually I was able to cut his hair at home.  
He would say "only 25 cuts" and would count each time I snipped.  I told my Mom, "I just don't want him to look like an a-hole."  I didn't trust my styling expertise.  But I tried, and whenever his hair got too long, we would sit down on the kitchen floor, mirror in front of us, and would pray it would come out OK.  

And then came in Jenn.  OUR hairdresser.  

Jenn is a friend of mine.  She has her own little shop in at a hairdresser co-op place.  She has her own room...with a door that can shut.  I've been going to her for a few years.  Jonathan has come with me on occasion.  So he saw Jenn in action. 

When I told Jenn that Jonathan would not get his haircut at a salon, she accepted it as a challenge.  She gave me pointers on how to cut his hair at home.  We made "appointments" to just visit her and try to sit in her chair.  She told me, "He can come here 100 times and sit in the chair.  I don't care.  It will happen one day."

For some reason, I recently stopped cutting his hair.  The last time I cut it, it was August, right before school started.  So it was long.  REAL long.  

Taken a few days ago.  Long.  Real long.

Since Jonathan still loves to watch pre-school TV, there are lots of episodes of his favorite shows with characters receiving haircuts. Shows like Handy Manny, Dora, Bubble Guppies, Team Umizoomi.  And for some reason, they were on a lot this week.  

We made an appointment.  We had no expectations. 
I told him if he let Jenn cut his hair, we could go get a doughnut.  
Positive reinforcement?  
Who cares.  It worked.  



Jenn was AMAZING.  Patient.  Kind.  Listened to Jonathan and did everything to make him comfortable.  He even chatted it up with her!  It was amazing to watch.  

And then I realized, he was not such a little boy anymore.  He was growing up. His hair was shorter.  He had confidence to let someone do something that was scary to him.  He was trying.  

That's when I cried.  I also realized that this haircut meant more to me then his very first one when he was a baby. 

"I have short hair!"

But ever the comedian, Jonathan asked about getting some hair color.  And Jenn made it happen.  (Don't worry.  It washes out).  

Jonathan has agreed to go again.  No more "a-hole haircut from Mom" for him.  He is now a big boy.

And I cannot thank my dear friend Jenn enough for accepting a challenge and making it happen.  She is not only OUR hairdresser.  She is OUR friend.

PS.  You can visit Jenn's at her J.Erin Designs website here!

Monday, October 27, 2014

An Apology to anyone who stayed at our Holiday Inn Express

This is an apology letter to anyone we may have woken up between the hours of 4 and 5am this morning at the Holiday Inn Express we stayed at last night.
No one was dying.
No one was drunk.
No one was being beaten.
It was just our son being dragged to the car to catch our 6:30am flight back home.

Let me back up a bit.

We took a long weekend trip to upstate NY for celebrate my Mother-in-law's 80th birthday.  It was to be a very low key weekend, but did require us to take 2 airplanes to get there with limited  flights.  So we did what we always do... prep for the worst and hope for the best.  We wrote a social story about the trip.  Prepped the boy as best we could, and off we went!  Mike and I were both a bit leery due to our son's recent behavior.  Meltdowns, tantrum and overall non-compliance has been the norm the past few weeks.  But things were settling down, so maybe we would get lucky.

The trip there was perfect.  Flights on time, good kid that listened well, bags retrieved from being checked-in.  All was well.  JJ was so excited to be in New York, He was so happy to see his Grandma, Aunt and Uncle.  He even loved our rental car and hotel room.  It was a very relaxing few days.

On Sunday night, we did cake and candles for Grandma.   Her birthday is actually on Wednesday, but we were not going to be there at that time.  This was not overlooked by JJ.   He FLIPPED OUT when we sang "Happy Birthday" because it wasn't really Grandma's birthday.  And he wanted to sing a different birthday song, but no one knew the song he wanted to sing. We knew we were treading into dangerous territory, so we hurried ourselves up and got back to the hotel room to get some sleep.

He knew we had to get up early.  He was telling us all weekend that we would leave at 4:45 and that we would wake up at 3.  It was in the book.

No dice.  4am rolled around.  Mike and I were getting our stuff together.  JJ would not move from sleep.  Like a sleeping Giant, if you will.  We cuddled him, and gave him kisses.  Rubbed his back and talked smoothly to pry him from sleep.
All we got was "No!  I want to sleep all day.  We will go home tomorrow."
We set the timer to get him moving into his daily morning routine.
We begged.
We pleaded.
We bribed.
We wrote more books.
We negotiated a 4:46 departure time.
We did everything we could.  I even told him he could go to the airport in just his underwear.

So you see, we were getting no where.  I had to pick him up.  It was 4:47 after-all!

He screamed like bloody murder.  He wanted his clothes on.  We put them on.  He wanted different pants.  All the pants were already packed away and in the car.  His negotiating was not getting us anywhere.

So I grabbed him, hoisted him up as far as I could.  Mike scooped everything up from the room.  And JJ just screamed as we went down the hallway, into the elevator, down the elevator and into the lobby.

He screamed like I was killing him; taking out his toe nails one by one.   But we just had to do it.  We had to leave.

Thankfully the front desk guy was so nice.  He told Mike not to worry, the hotel was not that full, and he had a little one at home too.  Mike asked, "With Autism?"  The guy said, "No.  But I know how kids can be."

We got him to calm down in the lobby, changed his pants, and made our way.  He walked out on his own accord to the need to carry him.  In the dark on the drive to the airport, I held his hand... me in the front seat, him in the back.  He whimpered.  He said, "I am sad.  I was crying."  And then he relaxed, looked out the window and said, "It is dark.  Soon the sun will be peaking up!"

At this point, we knew we were OK.  Our boy was back from him tantrum and was so much better.
That's when I cried.

Not because it sucked (because it did.)
Not because I was exhausted (because I was).
I cried because he is so tortured, and there is nothing I could do in the situation but to physically move him.

He has made so so so much progress in the past few years, but it was one of those times that remind us that yes, he has Autism.  And it is not easy.

And we will never, ever, ever book a 6:30am flight again.

PS.  We made it home without further incident.  We are so glad we all made it home in one piece. Now off to schedule that massage appointment.

PPS.  If you are reading this, and we did wake you up, please know a donation is being made to an Autism charity in your name. And we are really sorry!