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.