I Like What I Like

Bobby possesses a trait that I keeps me in awe.  He is not ego driven.  He doesn't have the sense of self-importance or self-esteem that drives most of us.

Bobby is an advertisers nightmare.  He isn't influenced by commercials. He does like them, especially the Empire Today carpet commercial (1-800-588-2300), which for some unknown reason is pretty popular in the autism community.  He also likes commercials for attorney Edgar Snyder (we live in the Pittsburgh tv market), that coincidentally lists a phone number.....I am beginning to see a pattern...melodic phone numbers.

He's not interested in what the commercial is pitching, he it only interested in the jingle.  He'll never call these numbers.....he doesn't really know what exactly a phone number is or how it's used (at least I've never taught him). Bobby hasn't ever wanted ANYTHING from a commercial.  No toy, no video game, no new trend.  He isn't impacted by product placement in stores.  Big, flashy, expensive displays are a waste of money to grab Bobby's attention.

He isn't envious of the possessions of his peers.  He has never wanted the same clothes (his clothes have to have comfort, not style), or shoes (he prefers Crocs and flip flops) that the other kids in school wear.  Not jealous of their winter coats, in fact he prefers not to wear one at all.  New backpack or lunchbox to fit in?  No, he could care less, and prefers that one that he is used to....no new one please.

Bobby isn't materialistic.  He doesn't have any prized possessions that he would be devastated if he lost (say in a house fire).  He'd have to have a new iPad ASAP, but the latest and greatest isn't necessary, he still likes his original one.  Not because it is an Apple product, but because it houses his favorite Nick Jr tv episodes, and because he can watch his favorite few YouTube videos, which he has watched hundreds, if not thousands of times.  He doesn't need unlimited videos to chose from, his favorite 15-20 are more than enough.  None of his toys would need to be replaced, in fact I threw away 4 garbage bags full a couple of weeks ago and he wasn't fazed at all.

Imagine just liking what you like and not being embarrassed whatsoever by your likes.  He still watches toddler television and would not stop and turn it off if a typical peer walked into the room.  He doesn't hide his likes, he proudly watches his favorite shows and eats only his preferred foods without any regard to how others may judge him.

His wants are utilitarian, a way to get his physical and sensory needs met.  He wants specific foods, and wants to go to the store and "push the buggy" so that he can pick out his favorite foods and make sure the fridge and pantry are full.  He also requests the beach, trampoline park and going for rides....which are all needs to calm his senses.

Imagine going through your day without the ego's need bogging you down.  Not worried about how the rest of the world sees you....social media would cease to exist!!!!  I wonder what decisions we would all make if we weren't thinking about how the rest of the world would react.  What would we wear, eat, do??

There is obviously a big down side to this as well.  You'd also have to imaging an existence in which you don't get to share your likes with others.  You know, when you try a new food that you can't wait to tell your friends about.  It's also an existence when you don't get to share the joy that others are experiencing when they share a new find or experience with you.  You'd miss out on so many new experiences.

What kind of chaos would the world experience if no one cared about what anyone thought about them?

I spend a good deal of time thinking about how (I think) Bobby's brain works and what makes him happy, in hopes to give him as happy a life as we can give him.  I thought that I'd share a glimpse of my afternoon pondering of Bobby's mind on this April day in honor of Autism Awareness Month.

Running through the tire aisles at Walmart....so much fun!!!

Sensitive Santa 2016

I had no intention of taking Bobby to Sensitive Santa this year.  He started middle school and it seemed like the perfect time to transition away from this event, he's a big boy now and his typical peer classmates are no longer visiting Santa.  Then, when he woke up Sunday morning at 5:30 am requesting to go to Giant Eagle or Target or to the mall....he woke up ready to go, which happens most mornings.

Fine Bobby, I'll take you to the mall, perfect timing!!  I put him in his every day clothes, no need to dress up since he won't be sitting on Santa's lap, just participating in some of the other fun events and taking a nice long walk.

Before we left the house, I took some annual "in front of the Christmas tree" pictures.  This process is easier if he has a reward, like going to the mall.

He cooperated, now off to the mall we go!!!  We walked a couple of laps around the mall and then I gave in and let him play in the kids play area.  He kept requesting "slide" so why not?  The mall is full of special needs families, they don't care if a big kid is in the play area.

While in the play area, he still kept requesting slide.  Sorry Bobby, that is the slide, it didn't shrink, you grew!!!  You are not going to find anything more thrilling here....you are over 4 years old!! After 5 minutes he was done.  "Come on Bobby, you can ride the train."  Part of the Sensitive Santa fun, the mall train is there giving free rides for the 2 hour event.

Bobby sat in a couple of different cars, but decided that he didn't want to ride the train.  What???? The conductor couldn't even believe that he didn't want to ride.  That's how many times he had taken rides in the past, the conductor knows us!!!  I still can't get over how his likes/dislikes are changing. Instead of riding, he preferred to watch the train go by and wave at them.

 I still can't get over the fact Bobby's hand is up in the air and he is waving at them!!!!!!!!

Not sure what came over me, but I decided to go over and get him a number to go visit with Santa. There was a new Santa this year and why not??  We took some pictures with the mall decorations in the background.

Finally time to get a Santa picture.

They offered to take the picture again because Santa is not looking at the camera.  I said no thanks, made me laugh that Bobby is the one actually looking at the camera!!!

So thankful that these Sensitive Santa events happen all over the country!!  It's awesome to see this group of kids having a fun holiday activity.  They could make ornaments, got a free book or cd, had a area with large blocks to build with and knock over, sensory activities including lots of bubbles being blown and most of all, socialization with our special needs family and friends.

Can't Believe This Day Has Arrived!!

Immediately after I finished the phone call with the officer from the sheriffs department, tears started rolling down my face, which completely shocked me.  I could not believe that I was crying. I could not stop crying.  Why was I crying now???  After all the sad part of this story was absolutely at the beginning, the day that a deputy from the sheriff's office came to our home, over eight years ago.

I was in such a funk for days after our initial meeting.  Having the police in your home, taking fingerprints and mug shots of your child.  Assisting the officer in getting profile shots and then filling out a form of any identifying marks on your child's body.  Despising the fact that we needed this service and at the same time feeling so blessed that the program exists in our county.  Before the officer left that first day, he fitted Bobby with a Project Lifesaver GPS tracing device that Bobby has worn every day around his ankle for the past eight plus years.

This bracelet was a vital part of Bobby's childhood.  You see, Bobby was a wanderer.  It is such a huge problem in the autism community that wandering is now a medical diagnosis.  They have zero sense of fear and zero impulse control.  On multiple occasions when Bobby was younger, he slipped out of our house undetected.  At this time, our house was the most child proofed home that we could make for him, but even all of those safety measures were not infallible.  He once walked into our neighbors house wearing nothing but his underwear during cold weather, thankfully it was a neighbor's house and not a strangers.

Our biggest scare with Bobby came one day when he was missing in the woods surrounding our house for about 45 minutes.  We were out searching for him, yelling his name and his dad went searching on his 4 wheeler.  After 20 minutes, I ran back to the house and called 911 while I was out of breath.  All I had to do was give them his name, his transmitter number, where he was last seen and what he was wearing.  All of Bobby's information was in their system.  Our address, directions to our house, his picture.  Thankfully Bob found him, a good bit away from our home, while searching on the 4 wheeler.

In the autism community, wandering is a huge issue, with facebook pages so that autism families in affected communities can help get the word out when I child goes missing in their area.  There are postings much more frequently than those outside of the autism community would ever believe. Unfortunately, death of the child due to wandering is way too common of an outcome in these stories, typically by drowning.

Yesterday, I spoke with Bobby's Project Lifesaver officer and told him that we were ready to take Bobby's bracelet off.....Bobby has outgrown his wandering tendency.  I spoke with many people in Bobby's life, most importantly his teacher, and we all agreed.  One of the conversations that I had on this topic was with my BFF and fellow autism mom, Shelly.  Bobby and Sonny pretty much lead the same life anyway and Sonny could have had his removed years ago. she decided too, that it was finally time.

So............TODAY, their Project Lifesaver officer from the sheriff's department is going to school and removing the boys' bracelets!!!  A day that both of our families, eight years ago, would have never imagined would arrive. Think I'll go shed a few more tears, happy tears, that this part of their life is behind them and that Project Lifesaver is there is we need to re-enroll.

Merry Christmas Bobby and Sonny, enjoy your naked ankles!!!!!!!

******UPDATE***************************************************************
Mission completed!!!!  So grateful that his teacher took pictures and texted them to me today,  Of course, I cried a little more!!

Changing

There was a banging at the front door.  I went to the door and opened it slightly, when I saw what was on the other side I tried to slam the door shut, but it was just too strong.  It made it through.  Bob and I looked at each other with complete fear in our eyes, knowing we were completely helpless to make it go away.  Like it or not, puberty is in the house!!!!

In autism land, life is pretty much like the movie Groundhog Day.  Not much changes.  You do get a little change here and there.  When your child is so predictable, the slightest change is pretty significant.  Bobby is now in the process of changing his long standing rules of his life on a a weekly basis.  These little things are huge because they have been a part of the obsessive compulsive nature of his personality.  

Probably the biggest, most notable difference with Bobby.......he isn't spending hours outside everyday.  My nature loving child who used to sit under the trees and play in the dirt for hours upon hours everyday will now walk outside, walk around for a few minutes and then go back into the house.  Every year he has played in piles of dried leaves for hours and hours each autumn.  This year he sat in a leaf pile for about a minute and a half.  

 Leaf play from years past.

The exception to the being outside rule, he wants to ride in the Rhino all day long.  He is asking Bob to take him for rides continually, only stopping to ask be to take him to the mall, Target or Giant Eagle.  His love of nature has been replaced by his love of retail!!  I tell him all of the time that he is an 80's Valley girl!!

 Rhino rides and pushing the buggy....Bobby's favorites!!

From the time that Bobby could undress himself, keeping clothes on him has been a struggle.  He had always preferred to be in just his diaper and then underwear.  Thankfully this has only ever been an issue at home, he has kept his clothes on in public and most importantly at school. The older he got and the less cute it was for him to be running around the house in his underwear, I discovered that he would keep on athletic, elastic waistband shorts at home, however no shirt was allowed.  For years as soon as he walked through the door, he has stripped off all of his clothes, underwear included, and put on a pair of shorts.  

Imagine my surprise when, out of the blue, he started wearing a shirt around the house.  However, he has a favorite!!  I'm going to be one of those people who is on facebook posting a picture asking anyone if they have this shirt for my son with autism!!!!  LOL!!!!  

This shirt is his favorite!! The shorts in this picture are his favorite too. He will go through the drawer and look for these, it doesn't matter that he has the same exact shorts in two other colors, he likes the green ones paired with this grey shirt. He also has this shirt in two other colors, the orange one is an acceptable substitution, but they are the only two that he ever picks out.

Guess what he does with these shirts when he takes them off??????  He hangs them up in the closet!! This is all him.  I have never had him hang anything up before!!  The first time I discovered this, I was doing laundry and looking to make sure that both of these shirts were in the wash. I searched all over the house and the closet was the last place I ever expected to find them!!  He wants to make sure he knows where to find them!!  

As if wearing a shirt at home wasn't exciting enough, he is also wearing shoes!!!!!!  What??  It's like I don't even know this kid!!  It started this summer.  In the past, the only time he has shoes on in the summer was when he was away from home, he NEVER wore them at home.

Shoeless Bobby

Shoes have always been an issue for Bobby because he has an extra wide foot, even in his super skinny days......just look at how wide those toes are!!  I have to order extra wide shoes athletic shoes for him to wear to school and he has always had Crocs for the rest of the time.  This summer I found extra wide New Balance slides (flip flop looking shoe) and ordered them instead of a new pair of Crocs for the pool and running around.  Well, Bobby loves them. 

Checking out the tire dept at Walmart wearing his favorite shoes!!

 He wears them around the house much of the time now.  Funny enough, now that it is cooler, he was switched to wearing his Crocs around the house!!  He finally gave in and started wearing a pair of slippers that match the style of his New Balance.  He hasn't been outside without shoes on this past summer almost at all.  He has even taking to sleeping in his shoes!!! Numerous times over the past couple of months, I have gone in to check on Bobby and he is fast asleep fully dressed including shoes.  Who is this kid???????

Puberty wise, other than body changes, the most notable change so far is moodiness.  Many evenings lately, Bobby has gotten weepy close to bedtime.  This is not a new behavior, but it is much more frequent.  I have to take him upstairs, get him to lay down, put on YouTube tv and watch Adele videos. I know, right!!??!!  Rolling In The Deep, Rumor Has It and Someone Like You are the three songs that he listens to and calms down with, then he begins to ask for other videos, mostly kid videos, but that Adele, she is his miracle worker!!

There are small things that used to a must for Bobby that have changed.  For instance, the sun roof cover had to be open when he was in the my car.  The vent didn't have to be open for air, just the cover so he could see through it.  The instant he got into the car, he slide the cover open, Bob always shut it when he was in the car without Bobby.  It has never bothered me either way, I honestly never notice it.  However, I looked up one day a month or so ago and realized that Bobby hadn't opened it in a couple of weeks.  It hasn't been opened since.  

Bob put a new stereo in my car so that I would have hands-free bluetooth for my phone.  Since the switch over, Bobby has to eject and insert his CD of choice into the player twice before he can listen to it.....a total obsessive compulsive issue.  

Yes, puberty has officially entered our house.  Bob and I are preparing for a bumpy ride!!!

Looking Back

Every one in a while, I come across something that causes me to reflect back.  Yesterday a group of pictures of Bobby playing outside among the autumn colors in 2009 was in my Facebook memories. My first instinct was to wish that Bobby was once again that age, a sweet, 5 year old Bobby....what could be better??  Look at that baby face, I could just kiss those cheeks for hours.

Then...........the reality of that time period started coming back.  Let me tell you.....it was NOT fun! You would never be able to tell from the sweet pictures but man, being Bobby's parent back then was difficult!!

The biggest issue during this time period......Bobby's lack of communication skills.  He couldn't tell me what he wanted making life rough.  Now that he has better, still not great, but much better, verbal communication, sometimes he asks for things that I would never guess that he was thinking about or wanting.  I was constantly guessing what he wanted and trying to keep up with all of his needs to minimize meltdowns as best that I could.  Probably even more difficult in the communication process was his lack of receptive communication, he just did not understand what we were asking of him verbally.  Thankfully, his receptive communication has grown leaps and bounds.

The other major issue of the time.........Bobby's wandering issues.  Bobby was a runner!!!  He wanted to go WHERE he wanted to go WHEN he wanted to go!!  We literally could not let him out of our sight! All Bobby wanted to do was be outside, for as many hours as possible.  On non-school days, we were outside at least 8 hours.  We were outside from the time he got home from school until dinner time, then back outside until bedtime.

He would run around until he found his desired spot in the yard and he would sit in one spot for an hour or so and play in the dirt, leaves, grass clippings, etc., then he would get up and go find a new spot.  That meant that mommy or daddy had to sit there for that long too.  It's very difficult to get yourself to the place where you allow yourself to be what your child needs you to be and turn off the part of your brain that feels like you are wasting so much time.....after all, there are meals to be prepared, dishes to be washed, laundry to be done, floors to be swept, tv shows to be watched and you are just sitting in the yard for hours upon end.  If we were not right by his side, he would bolt.  He knew when we weren't right there and took full advantage of these situations to go where he wanted to go, no matter the danger!!

The year before these pictures were taken is when Bobby began wearing a Project Lifesaver GPS bracelet at all times on his ankle because of this wandering tendency.  Bobby left our house, in his underwear, and went down our street and walked right into our neighbors house.  We live with the woods bordering our house on three sides and Bobby went missing in the woods for 45 minutes one time before Bob found him while searching on his 4 wheeler.  This particular time I had to call 911 and a Project Lifesaver search team was being assembled before I called back that he was found. More times than I care to remember, we would turn our heads for literally 1 minute and Bobby would be gone.....he knew when our eyes were NOT on him!!!!  This is the absolute best part of the present, Bobby no longer has this issue, but I am not just quite ready to remove his bracelet, since it doesn't bother him anyway.

Our home felt like a prison during this time period. Every door in our house has a key lock on it and all of the keys were kept on a key chain out of his reach.  If you wanted to go to the basement, you had to unlock the door.  If you wanted to go into any bedroom other than Bobby's, you had to unlock the door.  If you wanted to go into any bathroom beside the main level powder room, you had to unlock the door. The exterior doors also had alarms on them as well as locks.

Extreme child proofing was all over our house. Child locks on the fridge, all cabinets, all everything. Cooking was a pain because I had to unlock everything multiple times during the process. Washing your hands was even difficult because the soap was stored locked in the cabinet under each sink because Bobby would just pour out liquid soaps into the drain or he would chew on bar soap.  All of our surfaces were cleared off of just about anything because Bobby would dump it, throw it or trash it.  We got used to it and honestly assumed that our home would ALWAYS be that way.

Presently, we have zero child proofing in our home!!  Whoo hoo!!

Life is much easier now.  Don't get me wrong, it's not easy, but easier.

We have different challenges now that we didn't have then.  The number one current challenge....the word "buggy."  He YELLS this word, sometimes non-stop, periodically throughout the day and even in his sleep.  This word has taken on a world of its own.  It started out meaning,  "I want to go push the buggy at Giant Eagle (or Target)."  Now, it is almost like a tic that he can't stop yelling out.

One major benefit of this reflection.....I'm almost 100 percent certain that this behavior will one day go away and be replaced with another behavior.  He doesn't stand at the top of the stairs anymore and throw item after item down the staircase.  He doesn't turn on water faucets and run them non-stop to feel the water run over his fingers, he doesn't dump bottles of lotion over his head, he doesn't wet the bed or his underwear (whoo hoo!!),.....all things that drove us crazy at some point in the past.

So, no, I don't want to go re-live this point from our past.  Ironic thing is, I'm certain that in 7 years in the future, I will look back at this time and think, man I wouldn't want to go back to that point for anything......after all, puberty is here!!!  Body parts are changing, attitudes are changing......we are holding on, it's going to be a bumpy ride!!!!!!

Hanging Out With The Big Boys

 Nothing makes Bobby happier than going outside and seeing the Rhino in the trailer and ready to go. He knows exactly what that means.....riding with Daddy.  Nothing could be better!!!

Come on Dad, I'm sitting here in the truck waving good-bye, LETS GO!!

Yes, that's a happy boy!!!

Bobby finally got his wish and they were off for the day, leaving around 8:30 am.

Bobby is not much for being out of the Rhino. He stays in his seat, with seat belt on, while everyone else is out getting ready, having lunch, and just taking breaks.  This actually makes it a little easier on good ol' dad, he doesn't have to chase him around in the woods!!  You can pretty much hear Bobby's thoughts in this picture......come on guys, lets go!!!!

Pretty sure that Bob never thought that he would be the kind of man who grabs his phone to get pictures, but after living with me for 14 years, he is used to having tons of pictures of all of our adventures.  By the way, he does a great job getting some very good shots!!

Yes, Bobby is still in his seat while all of the other vehicles are empty!!

So around 1:00 I received a text, "Laid Rhino on its side no one hurt having a great time."

What??????  OK, I wasn't worrying before, but now.........   Dude, save that kind of story for when you get home!!!  After some back and forth, this is about what I got......Bob was taking a picture and didn't see a rut and drove into it (hands free driving applies here too Daddy!!!). Slowly the Rhino tipped towards Bobby's side and Bobby said "ut oh"!!  Fellow riders came running to help because they were worried about Mr. Bobby.  Bobby refused to get out of the Rhino, they lifted it back upright and Bob drove right out of the rut.  (I may have to come back an edit this story a little after Bob wakes up and clarifies!!).

They had an absolutely perfect day to ride!!  It rained the day before so they had plenty of mud to drive thru, but the rain was over and the temps were in the 60s to low 70s.

Lunch time!!  Bobby will just wait right here until they are all finished!  He was entertained by the squeegee in his hand most of the day!

Bob said that for the most part that Bobby did great!!

They were both extremely worn out and hungry when they walked back through the door at 10:30 pm.  Yes, they were gone for 14 hours and only 2 hours where riding in the truck.  They spent all day in the Rhino and drove about 60 miles!!

A perfect day!!!!