Darus' Language Inventory

I'm often asked the question - does Darus talk?  It's a tricky question.  For background purposes and to hopefully help another parent that might be on this journey, I'm sharing what our experiences have been thus far.

Darus started EI (early intervention) services in January 2013.  He was 2 years/4 months when he started.  During the 8 months of EI services, he had speech 2x a week w/ someone that was vendored by the Regional Center.  The person came to our house.  I don't believe that these 8 months were that well spent, to be honest.  I was really confused and in denial of my son's true needs, but I trudged along and accepted the services for what they were (and tried every kind of holistic thing I could find on the market for 'late talkers').  Additionally, around this time, he had a CMA (chromosome mircoarray) done, which came back normal.  The geneticist wanted to do WES (whole exome sequencing), but our insurance refused.  I fought, they denied.  I appealed, they denied ....   As his 3rd bday neared and there was still little to no improvement (and everyone telling me, "he'll talk when he's ready"), I started to get more concerned.  Our pediatrician, at the time, didn't feel like it was autism.  I ended up switching to a different doctor and got the Dx.  Shortly thereafter we learned about UCLA's ECPHP and we were incredibly fortunate to get into the program and it was a great boost.  While in the program, Darus had ST w/ with a talented therapist that did PROMPT with him.  She really tried hard and Darus had some success with her.

When we left the program in December 2013, we started in-home ABA and also started a new school.  During this time, I also took Darus to meet with many different speech therapists.  Trying to find someone that could help him, that could work with our schedule and was in a location that wasn't too far from everything else was proving to be impossible.  Needless to say, it was a very difficult and stressful time.  By this time, we had spent thousands of dollars on private speech and we eventually felt like we needed to balance our budget/resources.  We ended up relying on the speech therapist at Darus' new school.  She helped us develop PECS and worked with that with him.  She worked with him privately 2x/week and 1x/week in a group setting.    As I type this -- was it the right thing to do?  I don't know?  I think so.  The 'therapy' that he was getting that we were paying $150/hour for - was therapy that I could have done with him -- and I ended up doing just that.  We had tons of flashcards/PECS.  I would spend most of the time we had in the car doing flashcards with him.  His language would come and go.  Some days he'd say words for me, other days he wouldn't.  

Darus' biggest challenge is his inability to attend to any task for any period of time.  It's incredibly debilitating.  His body needs to be in motion all the time ... except, when he's restrained -- like, when he was younger, it was his highchair.  Now, it's his stroller (we have a special needs one - for bigger kids) and his carseat.  When he's buckled into either of these, I believe his body can calm itself.  I believe that his proprioceptive senses are met when he's restrained ... this is where we'd do our best 'speech therapy'.  We did a 'speech camp' the summer of 2014, which, looking back, I don't think was very helpful.  We also did Pediatric Minds in Torrance, and he had speech therapy there.  The ST there really wanted him to start w/ AAC.  Around this same time is when we got our results back from the WES and we learned that Darus had a Shank3 mutation - AKA Phelan McDermid Syndrome.  My heart sank.  I learned all I could about his condition - I'm still learning.  It was at this time when we decided to leave the 'traditional' autism treatment route of ABA and we moved to SmartStart.  Darus is still currently at SmartStart.  He has his ST & OT at school.  Smartstart is more about floortime/Greenspan ... rather than ABA.  He currently receives speech at school 2x/week. 

There's been a lot of acceptance and growing for me since getting his dx.  Spending money and time on private speech therapy just doesn't seem to be the answer right now.

I can tell you - Darus' speech is starting to emerge and evolve, and it's exciting!  I don't think it would be any greater by having add'l private ST.  For us, it's more about finding a balance for his body that craves motion.  Until we can really get him regulated (and we're trying so hard w/ different medications & therapies), expecting him to participate/cooperate in traditional ST will leave us all in tears ... it just isn't our path at the moment.

All that said, I have been working with an UCLA linguistics student and with his help, we've put together the attached speech sampling of Darus' current language inventory.  I hope to grow on this and use this as a benchmark of where he is now compared to where he'll be in the future.