"Enjoy Him." -Notes from Mervis

As I said before- she started out the conversation by telling us that when comparing Evan to other children his age with WS, he is doing AT LEAST as well as those children.  She said she always starts out by looking if there are any big delays or discrepancies and we do not have to worry about that.  That was the most comforting thing to hear. That, in addition to her laughing at the thought that he might be non-verbal and also stating bluntly, he certainly does not have autism. Both of those possibilities could coexist with the diagnosis of Williams Syndrome but she does not think either is accurate with Evan.  The overall feel of the whole interview is that Evan is doing what he should be doing based on his age and diagnosis. The not talking and not walking are both typical and not worrisome at this point.  However, that does not mean she did not offer many suggestions of how we can better support Evan’s development based on her research and observations of him during the two days.

Suggestions from Dr. Mervis and her team:
  • Continue work on releasing and giving items to us- dropping into containers and understanding the terms associated with the activity.
  • Work on strengthening his core strength- this is a biggie. She emphasized that this will improve his speech, his fine motor, walking, etc. His OT has said that his low tone will always make this area tough for him. 
  • Get a PT assessment and see if the OT is doing enough cross-over work in that area, or decide to add PT as another service he receives.
  • Make a photo book of all Evan’s favorite items and go over it with him several times daily.  We have a photo book of his family members and he does love to go through that- but I am going to make him a new one with pictures of milk, ball, duck, doggie, etc. She kept saying, “Make language meaningful.” 
  • Stay away from colors and numbers and focus on concrete items when working on speech with Evan. Abstract concepts like color, size, etc. can be confusing and make his speech development more difficult.
  • Use more “old fashioned” toys with him. Stay away from the ones that he can manipulate easily and that he will sit and open and close the same thing over and over or make the same music happen over and over. She suggested blocks, books, play kitchen items, dolls- toys that encourage the use of imagination.  
  •  Label everything in his environment, and talk about things as we are playing, “Evan has the ball, now Mommy has the ball. Mommy is pushing the ball, now Zoey is running!”
  • Babble back to Evan using exactly the sounds he uses. After you go back and forth a few times, babble to him using sounds from his repertoire, don’t always use words that he has not said yet.  (this was something I learned from reading a friend’s blog, and has started to do, but not enough)
  • Work on strengthening his lower jaw, the speech therapist said his muscle tone in that area is the lowest. This is probably contributing to his issues with swallowing.  
  • Use hand over hand to show him gesturing and pointing.
  • Look into Hanen Program- “It Takes Two To Talk” Luckily a very nice WS mama is lending it to us to read. 
  • Hold objects near our eyes when identifying with Evan- and encourage him to make choices. “Do you want the ball, or the book? “Great, you chose the ball, Evan!”
And the most important nugget of knowledge we received was, 
Enjoy Each Other

” Remember, he is your son. You are a family. Enjoy him. He is not a project.” 

Seems simple, but can be so easily forgotten. 

Enjoy this guy 🙂

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