Evan’s Muse

I think one would be hard pressed to find a person who does not like music.  I can’t imagine having someone say to me, “Music? Nah, not for me.”

Everyone finds a need for music in some way. It can relax you, excite you.  Remind you of treasured memories.  Ignite passion.  Soothe frustration. Become a hobby. Even a profession.

If you have been reading for a while, you know Evan has Williams Syndrome, and in the spirit of Williams Syndrome Awareness month, if you are not familiar with this condition, please read about it here.  Because of the gene deletion on the seventh chromosome, Evan has some developmental delays.  One of those that is more pronounced in Evan than in most individuals with WS, is in the area of language.  Receptively, Evan is very aware.  As one of his therapists says, “he is an observer.” He takes it all in, and his vocabulary is much larger than he lets on.  He reads on a first grade level and loves letters and words.  However, for some reason, he chooses to speak mostly in three word phrases.  I bring this up only to emphasize why music is so crucial in our house.

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Music is as important to our relationship with Evan as pretty much every other aspect of parenting.  That might sound crazy but I truly believe it.

If Evan has a tough time transitioning from one activity to another, we play music.

If Evan is stressed out after school and can barely say two words to me, we play music.

If Evan is not eating his dinner, we play music.

Different songs, genres, musicians for different circumstances.

Enter The Laurie Berkner Band.

This children’s music group has become more than just a fun way to fill some time.

He will be totally dysregulated after school- arms flailing around, grabbing at every remote or electronic device he can find. He seeks something familiar to calm him down after a full day of expectations, rules, and activities that are tough for him.  Then I put on the Laurie Berkner Band cd or You Tube channel and his whole body relaxes. His arms and hands slowly start to be less impulsive and his eyes lock with mine while he sings along to the song.

“Cuddle you, Mommy?”

He will go from kicking and walking around aimlessly to curling up in his bed with me, singing along.  Then the really amazing part might happen.  He will be singing along with the song and start to change the lyrics to talk about his day, or what he would like to be doing.  Or he will just change it up and use different animal sounds. Never missing a beat. Staying in tune.

Most importantly, he connects more freely with us.  Evan shares more of himself when music is involved.   The Laurie Berkner Band has been a Godsend.

So when this happened……..Evan’s world burst into a million rainbows and unicorns.  And so did mine.

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Evan meets his muse, Laurie Berkner

We had the opportunity to see the band in concert this past weekend.  It was Evan’s first concert, and I couldn’t be happier that it was LBB.  He stood off to the side of the stage bouncing occasionally, not singing much, but intently watching.  He would utter the occasional, “Cuddle you, Laurie Berkner.”

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I expected it would be a bit overwhelming for him, and it was.  He listens to these songs and gazes at Laurie’s face in her videos on an almost daily basis.  I find myself justifying the amount he watches/listens by thinking, “It’s better than mindless games on the I pad, right?” Don’t answer that. I know it’s better. 🙂

Following the show we had the incredible opportunity to do a meet and greet with Laurie and the members of her band.  I have to admit, there was this tiny part of me that worried she wouldn’t live up to Evan’s expectations, and honestly….mine.  I built up how awesome this woman must be because of how influential her music has been on Evan’s communication and level of engagement in the past year.  I was worried also that Evan would clam up a bit or not be as excited as we expected.  My expectations were completely unreasonable but I had them anyway.

Well folks, my expectations were exceeded.

Just look at these pictures:

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After holding his hands and bouncing up and down for a minute or so, she scooped him right up into her lap.  She sensed his high activity level and spoke softly and calmly the whole time.  He leaned against her and relaxed in a way he rarely does with anyone.  He definitely is a people lover, but he typically flits from person to person.  With Laurie, he would have stayed in her lap for the night.

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Look at his face.  The gaze.  Phew….

When his time was nearing an end, it was clear Evan was not ready to hop down.  Without any prompting from me, she said something like, “Ok Evan, I am going to put you down really gently, ready, let’s count, one, two, three…..” and she slowly put him down.

Giving him warning, counting with him, I mean…..Melt.

I know this isn’t her first rodeo. She has her own beautiful daughter and she has been in the children’s music biz for years.  But I watched her interact with child after child.  I watched a young adult with a disability become so excited that he mouthed her arm, almost biting her a bit.  She didn’t even flinch.

I walked away from the experience sobbing.  Like, ugly, can’t catch your breath, you might scare someone sobbing.  I was so overwhelmed with her humanity, her patience, and most of all, I was overwhelmed watching my little dude meet his idol.  Sometimes I really wish I could get into his little head and know what he is thinking since he doesn’t really articulate the way I wish he would.

But no words were necessary this time.  IMG_0025

Check out their You Tube Channel if you get a chance! https://www.youtube.com/user/TheLaurieBerknerBand

4 Comments on Evan’s Muse

  1. Janet
    May 11, 2016 at 12:53 pm (1 year ago)

    Soooo, I’m sobbing right now. I can’t even imagine how cool that experience must have been… Amazing…

    Reply
    • Erin
      May 12, 2016 at 2:36 am (1 year ago)

      Oh I’m so glad you enjoyed reading it. It truly was the most magical day.

      Reply
  2. Andrea Haglund
    May 12, 2016 at 9:19 am (1 year ago)

    LOVE! My daughter is 11 with WS. Just this week I was explaining this whole process of using music to motivate EVERYTHING when she was little. For us it was http://www.talkitrockit.com. I remember being in tears as I explained to the creators how my daughter responded to the songs. Laurie Berkner came to be a family favorite a couple years later. Your story is all I hoped it would be! My children have moved beyond these songs but working in a preschool I am so thankful I get to sing along with the great music of both these artist almost daily. I will smile a little sweeter as I “shake my eggs” or “go swimming in the bottom of the ocean”.

    Reply
    • Erin
      May 13, 2016 at 9:45 pm (1 year ago)

      Thank you so much for reading and sharing Andrea! I am looking into the talkitrockit program, I’m so glad you mentioned it!

      Reply

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