"Quirky" Behaviors = Ds Plus!

Going through some frustrations with Max, with trying to get the right documents in to qualify him for the Utah Autism Waiver that we won a spot on. Super frustrated. As much fun as Max is, he can also make me want to pull my hair out - yes, he is a true blue toddler boy, with several extra issues - ha! Someone on facebook used the term Ds Plus - loved it. Anyway, he dislocated my jaw this month. He is big and strong, but cognitively still so young. He jumped as I bent down to pick him up, and my jaw collided with his head and went sideways. Ouch. And just as it was feeling better, he kicked me in the face during a diaper change and made it worse!

Anyway, I won't bore you with all the details of the last 3 months trying to get the right paperwork from the right people to satisfy the autism waiver people, but we've spent several hundred dollars in doctor appt fees and done tons of legwork, only to come to the conclusion that the word "provisional" in his official diagnosis for autism, disqualifies him for the waiver. In order to get around that, they need documentation from a doctor detailing some of the behavior on their checklist. However, none of the doctors live with us and therefore haven't seen much of the behavior, and didn't feel right writing a summary about something they hadn't witnessed. So, one of them suggested I send a video clip of some of the behaviors. Luckily for blogging, I have many! So I setup a temporary blog and  emailed them the link... hope it works!!

If you want to see some of his quirky behavior, check it out at http://maxbehaviors.blogspot.com/

These are just from a section of the checklist they need. There are so many more behaviors that Max has where he would benefit from the ABA therapy the waiver would provide. Max's main challenge is his lack of communication. He'll be 4 next month, and only makes a few sounds, no words. He does say dada, when referring to Steve, but also uses da as a generic sound. He knows a few signs, but doesn't use them to initiate communication. He's a runner, and he's a very fast one at that. It's getting harder and harder to change his diaper and he really needs to get potty trained!! He's got sensory issues, OCD tendencies, ADHD....

There are definitely more great things about Max than negative things, but I'm still working on that post ;)
And he is progressing in so many areas. For example, he still has issues at times with more than one food in front of him at a time, but he does now allow a drink next to his food!! And he doesn't throw food as much anymore. As pictured below, he didn't want the bread stick by him, but instead of throwing it off the table, he pushed it to the corner! And he's leaving food on his plate more and more instead of dumping it on the table to eat. That's progress!!

Oh, and he babbled the other day - for the first time ever!!!!!!!!!!!!!!!!!!

Piper's Devotional

Every Friday, they do a morning devotional at Piper's school. A couple of the kids recite a thought, and then one grade sings or recites a poem, etc. Last Friday it was Piper's turn to give a thought.
Waiting for her turn (she's wearing the red bow in her hair)...

...and, I wasn't quite ready, and cut off the first of her part. Oops.

She's in the middle, top row.

and the second part...

Funny Reflection

Max was cracking himself up the other night. He was making funny faces in the reflection of the window.

 

He seriously loves to be on the table. It's turning into a bad habit at dinner time though - we are constantly removing him from off the table back onto his chair while we eat. One of his new favorite things is to try and drop some of his food in your drink during dinner - little stinker - he thinks he's so funny!

He was kind of obsessed with stacking and unstacking these cups the other night...

Warning - Gross Finger Pictures

Despite our best efforts to keep Max's finger bandaged, the tip didn't re-attach. It's been a week, and the tip skin is dying. Part of it is attached to the tip of the fingernail, and it just flaps open when not covered. Gross. So we'll keep a band-aid on it until the underneath part at least, hopefully, grows a protective layer. I can't imagine it's going to be pretty when the flap finally tears off ;)

On a side note, his lip is healing marvelously!

**2/16... and, it ripped off this morning ;(

The Art of the Brick - LEGOs!

We went and saw this great art exhibit last weekend in Park City - the artist, Nathan Sawaya (check out his website HERE), creates amazing things out of LEGOs. {It's free and runs through April if you're local.}
Picture overload... starting... now.

Some cute things...

Some weird things...

Some really cool and amazing things...

They even had an area to try your own LEGO skills.

Pretty cool.

A Bit Confused - But it Looks Like Autism

So, we finally had our appointment for Max to see a psychologist to rule out autism, or not. I don't care about the diagnosis so much, but we needed an official diagnosis to see if he qualifies for this Autism Waiver program that provides 20 hours/week of ABA therapy for two years.
The psychologist was great and Max seemed to really like him. He doesn't always like men, but he warmed up to this guy and even sat on his lap for a minute. He didn't even hide his face until the end of the appointment (we were there just under two hours and it was cutting into nap time).
I explained to the doc what brought us to this point, and although Max does seem 'different' than his peers with Ds, I thought that Max may just be 'extra' cognitively delayed, although his speech therapist insists he is autistic.
So we talked a lot during the appointment as to Max's behaviors, autistic-like and others, and he attempted to engage Max in play and communication. At the end of the appointment, he said he didn't think Max had autism, that he seemed like a 'typical' kid with Down syndrome, but could easily be extra delayed as I had mentioned. BUT, then he scored the test and said the result showed PDD-NOS (pervasive developmental disorder, not otherwise specified), also a spectrum disorder, but not autism. He said he would not give the autism diagnosis because Max is so social, and that is key in an ASD dx. He also assured me that Max would still qualify for the waiver with that diagnosis as it is a spectrum disorder. I was really quite happy with that. It seemed we had the best of both worlds - no autism, but still get the ABA therapy.
But then I got the report back.... here is the summary (the whole report is 11 pages long). It looks like autism to me!? and ADHD.... hmmm.

I looked up ADOS scoring online and found this (from http://www.autism-pdd.net/testdump/test16829.htm):

"My understanding of the ADOS is that a score of 0-6 is no ASD, 7-11 is ASD, and 12+ is classic autism." 
Max's score is 15. I do know that different parts of the test are scored and then added together. So maybe Max scored high in certain areas and low in others that make a difference.

I've given the report to the Autism Waiver people and expect to hear back in the next few days as to whether he qualifies for the ABA therapy.... 

So confused...

**Update... So I took the report to show Max's speech therapist and she laughed sarcastically. PDD-NOS isn't even a diagnosis anymore! (although, technically, I think it goes into effect when the new DSM is updated and published this May) The DSM (Diagnostic & Statistical Manual of Mental Disorders) recently changed the ASD definition. From the new manual (http://psychnews.psychiatryonline.org/newsarticle.aspx?articleid=1558424): 
"Possibly the most significant change—and certainly one that received much public scrutiny—is the consolidation of DSM-IV criteria for autism, Asperger’s, childhood disintegrative disorder, and pervasive developmental disorder-not otherwise specific (PDD-NOS)—into one diagnostic category called autism spectrum disorder (ASD). That change reflects the fact that much research has indicated a lack of concordance across clinical centers treating autism in how the four DSM-IVdiagnoses have been applied."
other info: http://www.autismspeaks.org/science/science-news/top-ten-lists/2012/field-trials-suggest-new-criteria-diagnosing-autism-reliable

So no more PDD-NOS, or aspergers - it's all just autism (ASD).

Anyway, his ST said with his score of 15 on the ADOS, he DOES have autism! 
She also explained a few things about Max and what she sees as his autistic traits - like how he is off the charts in certain areas (like gross motor), so that doesn't jive with him just being extra delayed. It's his lack of understanding how to communicate that is the key. I mentioned his lack of pointing as maybe being just a cognitive delay and she said that is something that is 'learned' very early on and is clearly a sign of autism in Max... (I can't remember exactly what she said, but it made more sense than it has in the past.)

Funny

This was sent home from school with Max on Thursday. Both Steve & I laughed. I don't know why the thought of Max doing a vision screening is so funny, but it is. Steve said, "should we frame it?"...

Crap. Not Again.

Maybe I should just start school to become a nurse so I can do stitches at home!

(crappy cell phone pic)
We were getting ready to leave the house to run errands and Max slammed his finger in the back door (dang OCD in him just will not tolerate a door being left open!) while I was putting stuff in the car. It was bleeding and I could see the tip flapping and that the nail was cut, but I couldn't see how deep it was. He was already in his coat and ready to head out the door, so I just ran the finger under water for a second, dabbed it with a paper towel, threw on a couple of 'Candy Land' Band Aids, and off we went. I did NOT want to spend all day at the ER, so we hit the Instacare first, hoping it didn't need stitches. And it didn't :) They cleaned it up and put on new band-aids  and home we came for lunch and a nap.

Poor kid won't use his hand if it has a band-aid on it. He's already fallen off the couch this evening, and came very near smacking his face on the kitchen table trying to climb down off a chair! Looks like we'll be meeting our out of pocket maximum deductible earlier than usual this year ;)

P.S. for the locals - the new Instacare downtown (in the new medical building Dr Durham just moved to) rocks!

Max's Great Aunt Janeen

Steve's cousin just posted this picture on facebook. It's a picture of their Aunt Janeen. She had Down syndrome, too. She passed away in her thirties, because back then, they didn't do open heart surgery on these kiddos. So grateful for modern medicine.
Steve remembers she really loved the Osmonds, and had posters of them all over her bedroom. She passed away when he was young. This picture was taken around 1960, so 9 or 10 years before Steve was even born.

Seriously, how cute are her glasses!

They're all Super!

We don't really care who wins...

We just wanted chili dogs for dinner!

...and we discovered Max's love of Beyonce... he was groovin' to the half-time show!