Our January Sucked

January has been a rough month for us.  Rough I tell you!  I will sum it up with this picture:

That blurry gray blob in the top left corner?  His foot that was kicking a million times a second.  And yes, my children are crazy flexible.  Inherited from my side of the family.

It's quite simple really.  We traveled to Utah over the holiday for 2 weeks.  We arrived home and welcomed the massive flu for both boys.  Then add in the Polar Vortex of death- which cancelled 8 days of preschool this month and 5 days of Speech and Occupational Therapy. 

And what are we left with?  Days and weeks that are completely free of any schedule or routine.  It sounds like any elementary schooler's dream.  I'll admit it:  I was in heaven for the first few days.  It is really hard for me to carve out a schedule and routine if I don't have to.  I much prefer to hang out in my PJs all day and watch shows with my boys without a care in the world.

The kids were sick so we couldn't venture out to an indoor play area or even take refuge at a new friend's home.  School was cancelled.  The wind howled.  And the ice on the roads thickened.  After watching 80+ hours of YouTube videos we were about going crazy (more on our favorite YouTube videos later).

So suffice it to say, I will be welcoming February with wide open arms.  Bring on February and health to all!

How was your January?

Christmas Travels Part 2

Hey, remember me?  Remember like a month ago when I said I was going to post part two of our Christmas travels?  This month has sucked rocks big time.  I'm talking lots of vomit, taking stool samples to the lab, and a crazy polar vortex.  I will explain my absence tomorrow.  For now, let's talk Christmas travels.

So once you have finally made it to your final destination and you've braved the airplane or long car trip, it's time to celebrate big time!  Seriously mama (or daddy or caregiver)!  Have a snickers bar already, give yourself a pat on the back, and put your feet up for a minute or two.  YOU ARE AWESOME!  Repeat that a few times and then get back to work.

I have a few tips to share on how to enjoy the rest of the trip.  I hesitate to share them because it is pretty much common sense.  I am hoping that I can give someone a new idea!  Here are my top 4 tips for vacation survival with kids on the spectrum:

1.  If You Are Traveling to See Family, STAY AT YOUR OWN PLACE! 

For us, this is crucial.  This might not be possible for everyone, I get it.  You've already forked out the money to fly on a plane or drive in a car for hours.  And you're visiting in-laws or grandparents or friends or whoever. Why wouldn't you just crash at their place for free?  I would say yes if your kids can handle it.  My kids just can't and that's okay. 

All of my siblings that live outside of Utah stay with their families at my parent's home.  This year two of my brothers and their families stayed there.  Most of the grand kids slept on the ground in an open room.  My parents also have 2 dogs that bark a lot.  The house is quite loud with lots of commotion, eating, dishes clanking, dogs barking, children screaming, and overall Christmas merriment.  I love the sounds of Christmas.  My boys don't love these sounds.  It can be very overwhelming for a little boy on the autism spectrum.  Don't get me wrong, they can handle some loud noise for a few hours (depending on their mood), but not constant for days on end.  If I don't provide a "safe" place for my boys to unwind, recharge, and calm their nerves (aka- a place that can be absolutely quiet) my boys don't do well.

 It is also AMAZING how well my boys will sleep on vacation if we stick to their exact bedtime routine.  Which is: bath, PJs, Tired Teddies, story, prayers, tuck boy in bed in his own quiet room and close the door.  Voila!  A sleeping child!

This Christmas we found a quaint little duplex on VRBO.  Have you heard of this website before?  We love it.  Vacation Rentals By Owner.  This rental saved us about 100 tantrums over the course of two weeks. :-)  It was so nice to be with our family during the day.  It was loud and chaotic and fun.  Most of the time the boys could handle it.  Sometimes they couldn't.  It was so nice to have the option of taking them somewhere else where they could unwind and not be amongst all of the commotion.

2.  DON'T FEED THE KIDS JUNK FOOD SNACKS!  

This seems like a no brainer, right?  Of course you wouldn't purposefully feed your kids Hershey kisses and peppermint M&M's for a whole day.  I am here to tell you that this may or may not have happened to us.  ;-) I speak from experience people!  However tempting it may be to hand your child some Christmas candy to quiet them for a minute or two, JUST SAY NO!  They will be grumpy, gassy, and then they won't have room in their tummies for a good dinner. 

It all spirals out of control when they don't have a nutritious dinner and they wake up in the middle of the night with a tummy ache or they are finally hungry.  I am not saying absolutely no Christmas candy, but just make sure they have eaten dinner before they have a few pieces.  It never hurts to let their tummies get a bit hungry.  Normally my diaper bag is stocked with goldfish crackers and teddy grahams.  The kids know it.  My bag was not stocked on this trip with anything.  It was truly one of the best things I did because my boys may not have been brave enough to eat all of the new foods they tried. Proof that he ate some type of Brazilian sausage.  AMAZING!

3.  TIRE THEM OUT!  

This also may seem like a pretty obvious one.  It's easy when you're on vacation to let the kids watch more TV than normal or to just sit around the house and relax.  There is a time and a place for that.  We want the kids to move their physical bodies and practice using their sensory system which includes proprioceptor and vestibular.  I know, weird big words. 

Proprioceptive information is sensations from muscles and joints. Proprioceptive input tells the brain when and how muscles are contracting and stretching and how joints are being compressed or stretched. It helps us to know where our bodies are in space and how they are moving. If you can run without looking at your feet, hit a baseball without looking at the bat, or pass a basketball without looking at your arm, then you are using a sixth sense known as proprioception. The vestibular system is the sensory system that responds to accelerated and decelerated movement. Think of swinging in a swing, doing a cartwheel, or riding a rollercoaster.  It is through the vestibular system that we learn directions and are aware of our body position in space. This input helps us to form a basic reference for all sensory experiences.  These are just two of the reasons my boys both are receiving occupational therapy.  Anyway, that's another story for another day.  My point is, tire the kids out!  Let them run around and roam free as much as possible!

 

 

4.  TAKE AS MANY PICTURES AND VIDEOS OF THEM AS YOU POSSIBLY CAN!!

I know what you're thinking.  All of the pics and videos are for the scrapbook, right?  Nope.  I use them as my own autism 'social story'.  In the autism world many teachers and therapists will use social stories as a way to teach a child a certain skill or concept.  For example, one social story book might talk about how a child will say hello and wave his hand when someone says hello to him.  Or if a child is going to the dentist you might write a social story for what will happen and what is to be expected during the trip.

It's not exactly the same, but I use these in the same way.  My children are narcissistic.  They love looking at pictures and watching movies of themselves.  We are an Apple family.  We have all things Apple.  We have an Apple TV and it is so awesome to throw our movies and pictures up on the TV.  We talk about the pictures and remind the kids what happened. 

It wouldn't be a Utah Christmas without a trip to the ER.  If you look closely you can see my fingers clasped around his ankle holding his leg and foot still for the x-ray.

 For example, while we were in Utah we took Ezra skiing for the first time.  We weren't expecting much from him.  He's only 4 and he's on the spectrum.  We just wanted a ton of videos and pictures so we could show and talk about how Ezra went skiing.  We also talk about different things that are happening in the videos and pictures.  Like how Ezra is wearing 'ski goggles' and his helmet is pink.  Children learn from talking about and experiencing life.  Hopefully the next time he goes skiing he will feel much more confident because he will remember and know what to expect from the experience.

Both of my boys absolutely LOVE dogs.  One day we will get a dog.

I hope you have found something useful for your next travel adventure!

Christmas Travels Part 1

We just got home from almost 2 weeks of Christmas holiday traveling.  While I am happy that we just sucked it up and did it, I will never do this again!  Traveling with young kids is hard enough, but throw in two boys with an Autism Spectrum Disorder and I was pretty much done after day 1!  :-)

Jason and I have our little tips and tricks that help us travel.  This may not work for everyone, but we've flown on a plane so many times with our kids that we know exactly what to do.  I would say that this was our most successful travel experience that we've had.  Again, every kid is unpredictable and totally different, so this might not work for everyone.

I have friends with children that always give me their two cents as to what they feel works best.  Most of them always tell me that we should travel during bed times.  Whether that's driving in a car all night to Florida or taking a night flight to the West coast.  We tried this about a year ago.  Worst decision we ever made in our lives!  We took a red eye flight to visit our family in the west.  It was only a 5 hour flight.  Asher was so tired that he was screaming and crying and making his body spasm.  I walked up and down the plane aisle to help soothe him and I bounced a little while I was doing it.  By the time I got back to my seat Asher stopped crying.  I thought I was a super awesome mom for saving the day and making my child stop crying.  I looked down at him and he looked up at me with wide eyes.  Then two seconds later I was drenched in throw up.  I was dripping in it.  It was all over our entire three seats in our row.  And we were only about an hour into the flight.  Both of my kids have terrible gag reflexes, but I also added bouncing to the list of no nos.  Needless to say, the only place my kids will sleep is in their own beds, not on a noisy airplane.  So we always travel early in the morning when they are already bright eyed and bushy tailed awake.

I've had friends that have also told me that I should give my kids benadryl to help them be calm and even fall asleep.  This is another one of my definite no nos.  We used to live in Northern California and decided to drive down to Southern California to spend Thanksgiving at Disneyland.  I gave benadryl to Ezra to help him fall asleep during our night drive.  Well, it did the exact opposite.  Ezra was super hyper and irritated and he did not sleep at all during our drive.  The next day at Disneyland he was such a grump because he was so tired.  Then I read the benadryl label that says that it makes some kids hyper.  That would be my kid.  It's not healthy for them, it's giving them drugs they don't need, and it is a definite NO on my list for traveling.  Instead, I always carry a travel pouch of Tired Teddies.  No joke.  They help with staying calm and falling asleep at the appropriate time to fall asleep (night time- not some random time during the day!).

This Christmas holiday we flew on a plane for 5 hours to visit our extended families in Salt Lake City, Utah.  5 Hours is a long time for the kids to sit and be quiet.  My kids hate coloring and any book I bring would last for 5 minutes of entertainment and then they would be done.  That's when we turn to the iPads.  Both my husband and I both have our own iPhones and iPads.  You can put books, movies, educational games, and anything else on them.  I know some people are severely hesitant to letting their kids play with technology items, but as a parent you have the authority to control what they are doing on the iPad or iPhone. 

First off, I don't have any games or apps on my iPad or iPhone that are not educational.  I don't do angry birds or car racing or anything else that can be a huge waste of time.  The only things that I keep on my devices are highly educational.  Also, I've disabled the wireless internet capabilities on my iPad so that the kids can't send emails (which has happened) or surf the internet or YouTube (which has also happened).  Ezra is 4 years old and he can spell and read over 50 words (multiply, lick, wave, xray, funny, the, in, scary, and sticky are some examples),  he knows all of the names of the bones in our body, he is familiar with negative numbers and realizes that they move backwards on the number scale, and he knows all of the planets and a fact about each one ("Jupiter is the biggest planet!"  "Mercury is closest to the sun!")  Now, I didn't teach him any of these things.  He learned it from different apps on my iPad.  I am in no way saying that technology should replace learning that comes from parents, but I don't think it's a big deal to let him play on the iPad for a bit.  And it's a lot more educational than any movie or cartoon that he could watch (and my kids don't watch cartoons- their choice- more on that later), so I don't let it keep my up at night.  Anyway, enough with my technology rant.

So I do let the kids play on the iPad after school.  Sometimes I let them play on it longer than I should.  I'm human and not the perfect mother.  Most of the time though I try to only let it be for an hour a day, but I am not staunch on this.  Before we travel anywhere we always go on an "iPad fast" for at least one week prior to our trip.  That way when we get on the airplane they are usually so excited that they finally get to play on the iPad that they are sometimes content for the full 5 hours.  We also download 2 or 3 new apps for the plane ride for the kids.  On the way there Jason downloaded this medical app that had you take apart the bones of a skeleton and name them.  I think Ezra was so content and happy with that app that he really didn't make a peep for 5 hours.  And it was pretty cute to hear his little voice point to the bottom of his neck and say: "Yeah, clavicle!"  And yesterday we were laughing so hard because Ezra said: "Yeah, vertebral column!"

Another thing that we do is we don't feed our kids AT ALL before we get on the plane.  Does that sound like child abuse? :-)  It's usually pretty early in the morning so they are fine not eating until the plane takes off.  If we were doing this in the afternoon then this would be different.  My point is just to do as much as you can while the plane is in the air so that it wastes time.  If you go to the airport and sit around waiting for your flight for an hour while playing with an iPad and eating a muffin, the kids are going to be extremely bored once they get on the airplane and they've already eaten and discovered the new apps.  So as far as food, we will usually buy something right before we get on the plane for the kids to eat.

Also, before we get on the plane we walk up and down the concourse.  We run after each other, chase each other, and get all of our energy out.  We let our kids roam free up and down the concourse (with us close behind them) and let them feel free.  We don't take a stroller (both of my kids have always HATED strollers).  And Jason and I both only take a backpack stuffed with snacks, sensory toys, fully charged iPads and iPhones, tons of wipes, pull-ups, and diapers.  We check everything else.

The last thing that I bring that I think is absolutely mandatory for travel is a small white board.  The kids' therapists recommended that we do this just for everyday life, and it has worked WONDERS!  Now I am telling everyone about it and spreading the word!  All kids like structure and knowing what is going to come next in the day.  That's why kids thrive on routines, because they know what is going to happen next.  But what do you do if your kids can't live life unless it is their same routine?  Or what do you do if you need to change the routine and do something else that day or go on a vacation?  It's hard!  Most neurotypical kids you can just explain to them that there is a change in the schedule.  I've seen all of my friends with kids do this.  I've heard them say: "I know Jack was going to come over and play with you today but he's sick so he can't now, maybe another time."  And just like that the kid was fine with the schedule changing.

My kids aren't like that.  I can't explain to them things that aren't concrete.  It's a little too beyond their ability yet.  So enter the small whiteboard.  It's very small.  I think the measurements are 8.5 by 11 inches, so roughly the size of a piece of paper.  It's small enough that I can fit it in my diaper bag or store it in the console of my car.  When our day is going to be different or thrown off, or if I can tell the boys are just having a bad day.  I will pull out the whiteboard and quickly draw a picture of what is going on that day.  Also when we are done with one of the activities I will pull it out again and cross it off.

So as you can see, I am not an artist.  At all.  In fact, I would have gotten a 4.0 in high school if it wasn't for that B- grade I got in art class.  Yeah, I hate art. :-)  Anyway, on this day Ezra was having a hard time getting his shoes on for school.  He kept fighting me on it.  So I drew up a little board to show him that he had to get his shoes on if he wanted to ride the bus and then have the bus take him to school.  Even though my pictures are always terrible, he gets it and it works.

My whiteboard was a saving grace while we were visiting family in Utah.  On this day it was a busy day of family overload and stimulation.  We were also visiting two different families.  So we told Ezra and Asher that we were going to go play with Sarah at her house.  It's Jason's sister's home and Sarah is the youngest that plays with my boys.  They have a big slide and snow at their house.  Then we went to visit all of my family at my parent's house.  My mom has two white teacup poodles and my boys are in love with them.  So I told them that we were going to see grandma's dogs.  Then the last one is some iPad time.  When we went back to our condo that we were renting, I let both of the boys "veg" a bit by playing some iPad.  This is his robot app.  Don't I draw a great looking robot?  Just kidding!

That's all for part 1.  I will have more tips and tricks for travel and the rest of our trip in part 2.

Holiday Cheer

You know how the holidays are.  Eat, sleep, run around town like a crazy person, repeat.  That pretty much sums it up.  Here is a quick holiday recap:

Thanksgiving!  We've been "alone" for Thanksgiving for years.  I think maybe we're going on 7 years?  Anyway, each year we usually cook or big spread and share it with friends.  It takes forever, it's exhausting, the kids don't even eat what I cooked, and the smell usually nauseates me so that by the time we actually eat I don't want to eat it.  Doesn't food cooked by someone else always taste so much better?  This year I needed a major break.  So we said screw it and went out to the fanciest place that would allow two kids that didn't always sit still with a white napkin across their laps.  A very non-traditional Thanksgiving!

Waiting for our table.  These boys were hungry!

Dinner time!  Everyone thought Ez's glasses were so cool.  The kids mostly ate the cheese rolls.

Then it was off to the Smithsonian's Air and Space museum.  When we first moved here over 2 years ago we went here almost every weekend.  The kids loved it and hey, it's free!  Gotta love that.  Ezra is still extremely into space.  That was actually one of the first 'super autism powers' that we noticed that Ezra had.  At the age of 2 he could name and identify all of the planets in the solar system.  More on that later.  Anyway, Ezra still loves the Air and Space museum and asks to go here almost daily.  Ezra: "Mama, go see planets."  Me:  "Ezra, it's time to get ready for the school bus."  Ezra: "No!!!!!!!!!!!!! Go see planets!"

This is their favorite room.  Asher doesn't like the flash so he's plugging his ears.

I asked Ezra to look at me and the camera.  He got embarrassed and shy and covered his face.

"Cool!  Astronaut!"

It was a bitter cold day.  The boys were too cold to walk so Jason carried them.

Friday it was all about the Christmas tree!  I love alive Christmas trees and whenever we can- we try to get live trees.  Asher was a having a bad day so just me and Ez ventured out to pick the perfect tree.

Picking out the perfect tree.

Ezra stood back because he was terrified of the chain saw.

One last trim before we take it home!

And the finished product! 

Snuggling by the fire watching home movies.  These kids like watching themselves!

On Saturday we ventured out to ICE at the Gaylord National hotel in National Harbor.  Every year the Gaylord National does a special ice exhibit called "ICE" where everything is carved out of ice.  EVERYTHING!  The exhibit is kept at 3 degrees and you have to wear these special coats over your own coat.  We crossed our fingers, paid the $30 per person admission, and hoped that everyone would have a fun time.  We didn't last as long as we'd hoped.  Asher by the end started getting super whiny and just wanted to be held.  He was freezing and we should have been better prepared and put the kids in full on snow clothes.  Next year!

This little stinker was frozen solid by the time we were done.

Brrr!

This is the view from the top of the slide.  Ezra loved the slides even though his bum was frozen by the end!

Ezra was the only one that would pose for me!  It was SOOO cold!

We finished up the Thanksgiving weekend back at the Air and Space Museum.  Ezra was begging us to go back there.  So we somehow ended up back there again.  We're pretty lame parents, I guess!  It was a packed weekend.  Now that Thanksgiving is over, let the Christmas festivities begin!

Best Friends

Hope you all had a great Thanksgiving!  Tis the season to be thankful!  Today I am so thankful that these two little buddies are such good friends.  They need each other!  In a world where they will constantly be different from their peers, I am so happy that they will have each other.  Of course I will be there for them too, but it's comforting to know that they will have a buddy that they can actually empathize with.

Riding the metro!

Grocery shopping!

At a birthday party

 Don't get me wrong, they fight like cats and dogs.  Ezra is very sensitive to sound and he often doesn't like the little non-word noises that Asher makes.  Asher isn't great at sharing yet (we're working on it) and he is constantly taking things from Ezra.  Constantly!  He wants to be just like his older brother.  These are just two small examples, but they fight like regular brothers fight.

I caught them holding hands!  Sweetest moment ever!

At George Washington's Mount Vernon.  Their favorite part is the miniature model of the house in the visitor center.

They love going for bike rides!

 On the flip side, they are the sweetest kids to each other.  I know that they love each other.  Ezra is such a loving older brother who is always concerned for Asher's safety.  We go to therapy a few times a week and we usually take the elevator up to the office.  Ezra gets so concerned if Asher is too close to the elevator door.  It's actually really funny and I usually have to explain to the other passengers in the elevator why Ezra is freaking out.  When we wait for the bus in the morning Ezra gets concerned if Asher steps a foot on the street.  He will look at me and then says: "Asher, c'mon!" to get Asher to step back onto the sidewalk.  It's honestly quite adorable, even though it is a little bit mother hen of him. :-)  Then Asher always gives things to Ezra when he is crying or having a tantrum.  He will hand him a bag of goldfish or one of his small cars.  I know they love each other even if they show it in a different way.

Snuggling and watching a quick show before bed.

Playing catch at the pool together.

 So today I am so grateful for these two boys.  Thankful that they have each other and thankful that I have the privilege of being their mama.

Sharing some iPad time together!

Sleep is a Beautiful Thing!

Happy Thanksgiving!  Today I am so grateful for sleep.  SO GRATEFUL!

I was reminded last weekend how much we love sleep and Tired Teddies.  If you knew me in real life, I've probably already proclaimed to you how these miracle herbs have changed our life.  You think I'm kidding?  Read on, because I'm not!  Tired Teddies are an all natural chewable sleep aid for little ones.  It's basically a chewable melatonin with some other awesome special herbs that help kids sleep.  It's all natural with no crap or fillers, and best of all- it works!!  No guilt, happy kids, and a very happy mama.  You see, I think my boys both win the grand prize for worst sleepers in the world.  They are terrible sleepers.  Terrible!

My oldest didn't start out a terrible sleeper.  He was actually a pretty easy baby.  He started sleeping through the night at 8 weeks.  He was always so content to just be in his crib by himself and watch his ceiling fan slowly spin.  I could leave him on the ground and he would entertain himself and be content on his own for hours.  But this is all another story for another time, we're talking about sleep today.

I got pregnant with my 2nd son, Ash,  when my oldest son, Ez,  was just barely 12 months old.  I think it all started to go downhill from there.  When Asher was born, he was a terrible sleeper and he cried ALL OF THE TIME.  I blamed it on so many things.  He was born premature (both of my boys were born 5 weeks premature) and he spent over a week in the NICU.  When we finally took him home I woke him up and fed him every 3 hours.  He was so little and he needed to gain weight.  Months went by and although I was not waking him up in the middle of the night to feed him, he was still waking up. 

Asher did not sleep through the night until he was 18 months old.  I am not kidding.  I had every book imaginable on sleep training.  I ordered dvds from the baby whisperer.  I made sure he ate a ton of food right before bed because he would wake up hungry.  Still, he did not sleep through the night until he was 18 months old.  And when I say 'sleep through the night' I mean he went from waking 4 times a night to waking 1 time a night.  Believe me when I say that was a fuzzy 18 months for me!  I was so sleep deprived. 

This was during his 'I have to wear my helmet everywhere' phase.

 Ezra was always good about going to bed, but he would wake up in the middle of the night and 'sleep walk' and do weird things.  He really freaked me out one night when he got up out of bed and with his eyes closed sat upright in a chair we had right beside our bed.  I worried that he would walk right out the front door!  I still do!  We've taken the necessary precautions for a lock on the top of the front door.  We also had to start locking him in his room (for his safety).  Even still, I would find him in his room the next morning in the weirdest positions or on the hardwood floor with his head smashed into the corner of the wall.  Inevitably, he would wake up tired and groggy and not well rested.

Fast forward 6 months.  Asher had just turned 2 and Ezra had just turned 4.  I ordered Tired Teddies and was very skeptical.  Very skeptical.  A friend of mine had heard about them and knew my situation- as Tired Teddies advertised that they were great for kids with Autism.  Well, I was blown away.  Both of my boys, let me repeat that, BOTH OF MY BOYS slept through the night that first night with absolutely no problems.  This had to be a coincidence, right?  So the next night we tried them again- and same thing!  To make a very long story short- we started using them around April/May of this year and I have been using them every single day since then.  For the first time in almost 3 years I am also sleeping through the night because I am not getting up with the kids!

This was his 'wear your sunglasses everywhere' phase. :-)

In the past 6 months or so, I have been telling everyone about Tired Teddies.  It sounds so cliche, but they have really changed my life.  It's not fun to not sleep through the night.  My boys were missing lots of preschool and we were missing lots of church because everyone was sleep deprived and getting sick!

Sleeping like a champ!!

 So this past weekend I went out of town to attend my best friend's wedding.  My husband took work off and stayed home with the boys.  What a great guy, right?!  Jason is normally a very busy attorney and he isn't usually home when I put the boys to bed.  So he doesn't really remember every part of our bedtime routine.  About 2 days into my absence, Jason was going nuts.  The kids weren't sleeping and they were having some bad tantrums.  He called me and was complaining to me about it.  I was like: 'well did you give them their Tired Teddies?'  And the answer: no, he didn't.  The next 2 nights the boys got their Teddies and there were absolutely no sleep problems.  These little teddies are a miracle!!  I was reminded how awesome these little herbs are when we got a glimpse of what our sleepless life used to be like. :-)  And you know what else?  They taste really good too.  My boys both love the flavor.  And should I be admitting this- I have been known to take one when I am having problems sleeping.  They taste great.

So that's my soapbox.  Tired Teddies gave me back my sleep and my life!  As dramatic as that sounds, they truly did.

Kennedy Krieger Institute Center for Autism

Oh, Kennedy Krieger.  I have a love / hate relationship with this place. 

On the one hand, I feel so grateful and fortunate that we live in an area that has such great autism services.  The Kennedy Krieger Institute Center for Autism is apart of the Johns Hopkins hospital in Maryland.  The research they have going on and the doctors that they have in this building are nationally recognized.  This entire building is dedicated to just autism.  They know what they are talking about here.

Now to some complaining.  We make the 1.5 hour drive to this place 4 times a year for the boys' doctor appointments.  I seriously could drive here with my eyes closed.  Seriously.  We also participated in a weekly Occupational Therapy program here over the summer while the boys were out of school.  So like I said, I drive here a lot!  They also both have a developmental/behavioral pediatrician and a neurologist.  The boys have an appointment every 6 months where they do extensive testing.  They often schedule our appointments over the course of 2 - 3 days.  Mostly because the testing is long and tiresome and they schedule in breaks for the kids.  It is exhausting mentally and physically.  Not just for the kids, but for me also.  Again, while I love this place to death- there is nothing more disheartening to listen to the results of the testing after a few long days.  I hate hearing how far behind my kids are.  Just when I think they are improving so much, it leaves me deflated to hear what age level they are at developmentally.  Ezra was diagnosed with autism while we still lived in California, but Asher received his diagnosis here.  Anyway, I really hate to complain about what a blessing it is to have such amazing doctors, research, and therapies at my finger tips.

This past week was our big Kennedy Krieger visit for Asher's 32 month appointment.  Now that the boys have a diagnosis, the doctors here closely follow them, offer advice and therapy suggestions, and do follow up testing to see if they have improved.  The testing they do is also used for their research and new findings in the autism world. 

Asher was less than 5 months old when Ezra was diagnosed with autism.  Most people aren't aware that if you have one child with autism that there is almost a 20% chance that you will have another child with autism.  Especially if that child is a boy.  Now, while they still have no idea the causes of autism (although there are tons of studies, articles, and journals that have theories) they are sure that it is in some small part genetic.  So at the age of 5 months old we had Asher participate in a sibling autism study at the University of Maryland.  Even at the 6 month mark, Asher was behind where he should be developmentally for his age.  I remember the day so well like it was yesterday.  Asher had his 14 month appointment with the sibling autism study and all signs pointed to him also having autism.  I wanted to crumble into a ball and die.  I remember driving home with sweet baby Asher in the car.  It was crazy raining, and my eyes were so full of tears I couldn't see where I was driving.  I looked in the rear view mirror and saw Asher, happy as a clam, with his fuzzy stick straight hair and big blue eyes.  I didn't care what label the world gave him.  So what, he has autism- I told myself.  Some people have children dying from cancer.  Ezra and Asher definitely weren't dying, so what was I crying about?  I scraped myself off the floor (although I still sometimes have to do that) and told myself that I would be their advocate.  They didn't have a voice, so I would scream to the whole world and be rooting for them, cheering them on, and advocating for them here on out.  Anyway, sorry for the rant, but because of Ezra's diagnosis we were super vigilant in testing Asher, taking him to see doctors, and having him in therapy and play groups.

What a cute little stinker

Now onto our appointment!  They first start with an eye tracking test.  This is such an interesting and fascinating test.  They start with Asher strapped in a  high chair and have him watch a short cartoon.  They played a 30 second Thomas the Train clip to get him interested in the video and for the computer to lock on his eyes.  Then they will show short video clips, pictures of faces, and geometric shapes to see what Asher is interested in looking at.

They use a red dot for him to lock his eyes on so that they will be able to track his eye movements.

I know this picture is crazy blurry, but here is examples of some of the things Asher would be looking at.  Here there is a picture of a man's face and to the side a brightly colored geometric shape.  Some research and studies have found that children with an ASD usually prefer to look at the geometric shape over the person's face and eyes.  To understand more about this, you can view a research study out of UC San Diego where they tested the exact same thing.

Next is the ADOS, which stands for Autism Diagnostic Observation Schedule.  Basically, it's just a test where an examiner observes Asher.  They observe how he plays with things, how he communicates, and how he responds to certain obstacles the examiner puts up.  I didn't take many pictures, but here is Asher in his first test.

They take Asher into a room with a 2 way mirror where there is a bunch of different toys that he can play with.  Asher thinks that he is alone and they observe him playing by himself for 10 minutes.  They see what toy he wants to play with and how he plays with that toy (if he plays appropriately).  My kids always always always enjoy toys that have an aspect of cause and effect.  Here Asher is hitting balls into a toy with a little hammer.  He does something and then something happens-- cause and effect.

I like to think that this is just the little genius engineer in him. :-)  We had to show both Ezra and Asher (and we continually show them) how to play with most toys.  Like you push a car on the ground and make vroom vroom sounds.  Or you tuck in baby Elmo in his bed with a blanket and give him a kiss.  Or you fly a rocketship in the air and not just hold it in front of your face and spin it's wheels.  While pretend play and childhood play comes so easily to other kids, we have taught these boys how to appropriately play with certain toys.  And when I say "we" I am probably taking most of the credit.  When I say "we" I mean the therapists, teachers, and aides that work with our boys everyday.  Now we are trying to have more toys in our home that are not cause and effect (trying to limit that iPad!!!!) and that foster pretend play skills.

They did a number of other testing over the 2 days we were there.  Gross motor, fine motor, speech, coordination, head size, eye gazes, and communication were all tested.

Taking a juice box break

The good news: we survived the testing and no humans were harmed in the making of this movie!  Ha ha.  Also, Asher is improving.  He is still about a year behind in his age level, but he is improving everyday and making our house such a happy one in the process.  I love absolutely everything about this kid.  No matter what the world calls it: autism, PDD, Aspergers, or whatever else they come up with.  Asher is still my Asher and he is pretty awesome.