Primary Program

We are members of the Church of Jesus Christ of Latter Day Saints.  This past Sunday was our ward's Primary program for sacrament meeting.  Once a year the children 3-11 years old put on a program for the congregation.  They have speaking parts and sing songs they have been learning throughout the year.

To give you just a little bit of background, Preston is 7.  This is Preston's 4th year in Primary.  Every year they have had to have a teacher specifically assigned to sit next to Preston.  Sometimes he didn't follow what was going on and just needed help to figure out what he was supposed to do, other times he had a complete meltdown.  He always struggled to sit still.  He would have his head under the seat or be halfway falling off his chair.  One year he was struggling so much that I opted not to have him participate.  It was a sad year for me.  Dylan was 8.  Preston was 5.  Dylan and his dad had gone on a trip to Argentina so that Dylan could meet extended family and learn more about the culture and language.  Dylan ended up being out of town during the program that year and Preston couldn't handle it.  I had two kids in Primary and neither participated that year.  It was hard.  I knew nobody could handle him.  I was dealing with major fits and meltdowns at home that required me to physically carry him to his room to calm himself and decompress several times a day.  Knowing this, I chose not to have him participate.  But the day of the program, I stayed home.  The reality of watching so many "normal" kids not struggling through every step of their lives was just to much for me to deal with that day.  Other years, he was able to get through the program with an adult at his side, but did not open his mouth to sing one word and got really nervous during his little speaking line.  He prepares, practices, knows it by heart, but when he gets in front of people, especially with a microphone, he freezes.  He clenches his teeth, mutters the words with his body turned as far away as possible and just gets it over with quickly.  That's what the other years looked like.  I have to say that as difficult as dealing with a "different" child has been, Preston has been a true delight.  Although he never sang, the kid loves music.  He swayed and moved with the music and always struck a pose at the perfect moment.  He feels through music and it's very obvious in his actions.  Though quite distracting, it was definitely one of those moments where I smile and think to myself, "Yep, that's my kid.  He literally does not know he's misbehaving right now.  He's so unaware of the world that surrounds him that he does not see, hear or feel anything but this music.  But yes, he's a complete distraction as he jams out to church music in front of the entire congregation."

Back to Sunday.  The program started with a song.  I looked up and saw Dylan singing and was quite pleased, turned my head to the left and found my spunky little 4 year old smiling and waving to everyone with all the charm of a princess, then turned my head again to find Preston.  He was toward the top on the right.  I did a double take.  He was singing.  Every. Single. Word.  And...he was holding still and looking at the choir director.  Tears just started pouring down my face.  No way this is happening!  Now, was it perfect?  No!  He ended up chatting with the boy sitting next to him way more than he should have.  He also ended up dancing to the music more than once.  A couple times he even struck a pose when the music changed suddenly or he really liked the beat.  And at the end of a song that ended with the words "Holy Ghost" he put his hands up to his mouth like his teeth were chattering and said, "oooo" in a scary voice as he was sitting down.  It doesn't help that it's almost Halloween. :/  I never know whether to laugh, cry, hide, or just smile and say, "Yep, he's mine" at moments like those.  But overall, he was amazing.

When it was his turn, he stood up and confidently said his part.  No mumbling.  No turning his shoulders away from the congregation.  No running away.  No breathing or yelling something completely unrelated into the microphone.  He just said his part without any help and went and sat back down.  We are blessed with an amazing community of friends and family that love and support us.  They have watched Preston grow and develop as we have sought treatment and worked with him every step of the way.  So it should not have surprised me that after he said his part, several people turned to look at me and give me a happy, proud, or shocked look.  I was already emotional (surprise, surprise), but seeing the reaction in my friends and family as they, too, publicly witnessed Preston's progress made me sob.  Seriously!  There was an audible gasp followed by free flowing tears.  Yep, I did the ugly cry.  For real.  In public.

Just a quick side note on the chatting with his neighbor part.  I don't think anyone could have predicted that.  They weren't friends.  They barely knew each other.  In fact, after the practice the day before, Preston informed me that the boy sitting next to him didn't like him or want to be his friend. I didn't think much of it at the time. But Preston came home Sunday afternoon and told me they talked and worked it out and that they are friends now and had planned a playdate at his house the following day.  Oh boy!  Kids and their big plans.  Words cannot describe what this chatty little moment means to me as his mom.  Preston has always played well with others, but would get nervous and anxious at first and struggle to know how to make friends.  Once he made a friend, he was usually a good playmate, but the initial part of relationships was always difficult for him.  Now it seems he has complete confidence in his ability to interact with his peers.  It's incredible!

This blog post would not be complete without discussing Dylan.  Dylan is 10.  He's supposed to be old enough to hold still and sing.  He should be setting an example and leading.  It's expected of the older kids, just as moving and waving and talking too loudly is expected of the youngest class (that would be our Marissa).  Dylan has never created problems during a Primary program.  But he would forget to stand up because he wasn't paying attention, move around a lot, and often space off.  And he rarely sang.  I'm not sure if the singing part was because he was daydreaming or if it was an "I'm too cool to sing in front of others" thing.  But it was night and day watching him two days ago.  He stood up at the right time and held still during every song.  He watched the chorister the ENTIRE time and sang every single word.  I caught his eye only a couple of times because he was watching the chorister so intently, but I subtly gave him a thumbs up sign so he would know I saw him and was proud of him.  He smiled slightly, kind of nodded his appreciation of my compliment, and got right back to business.  It was so mature.  SO MATURE!  I loved seeing that from him!

I know this blog is about Dylan and Preston and their experiences during Brain Balance, but I want to mention my little Marissa while I'm talking about the Primary program.  She's a doll!  She's cute and girlie, but totally tough.  She's feisty, but loving.  Probably like me.  And my great grandma come to think of it.  She sang, waved to everyone, kept changing locations when she stood up to sing, needed a potty break part way through the program, and turned on the charm as needed.  The day before she came home and told me that they helped her with her part during the practice and they did it wrong.  I'm guessing she must have hesitated so they whispered something in her ear.  She was so frustrated so I attempted to help her problem solve.  "But Mom, they think I don't know what to say.  But I do!"  I said, "Just stand up and say your part and they won't think they need to help you."  "Yes they will," came the reply.  "Well, just tell them that you know your part and don't need help."  Of course I didn't think that through at all.  There was no time to tell them she knew her part before she actually got up there.  I was just trying to help her have confidence to start speaking when it was her turn.  She waited in line for her turn to speak, stepped up to the stool in front of the microphone, looked up at the leader helping the kids with their speaking parts, put her hands up as if to gesture and push her away, and whispered loudly, "I don't need any help!"  Then she stepped onto the stool, took a deep breath and spoke clearly into the microphone, "I can show love for my family by giving them hugs and kisses."  Then she stepped down and sauntered back to her seat.  (And yes, she is the one who decided what to say.  I could not even attempt to give her a suggestion because she had her mind made up already when we were practicing at home.  "No, Mom!  I am going to say hugs and kisses!")

My children have amazing teachers, leaders and music instructors.  They were prepared by the very best.  But I was still worried.  You can only do so much with the material you are given.  But they were AMAZING!  I can see the growth already, and we are barely scratching the surface with the changes we are witnessing.  It's surreal.  I feel like I'm living in a dream - and not just because I'm completely exhausted.  ;)  It's one of the most taxing experiences of my life (physically, mentally, emotionally and spiritually) but it's happening.  We're in the middle of this process...of change.  There really is hope for children with a myriad of challenges, disabilities or diagnoses.  I just want to shout it from the rooftop!  Don't give up!  You can do this!  There is hope!  The brain is absolutely fascinating.  You don't just get what you get and pray you end up with a good one.  The brain is pliable.  It can change.  It does change.  And A LOT of things affect it...for better or worse.  It's so crazy being in the middle of such an intense process.  I feel like we're in a cocoon.  We're kind of in our own little sheltered world right now, with very few people able to see the day to day effort we put forth.  My scientific-minded Dylan would tell you butterflies do not spin cocoons, they shed their skin and form a chrysalis.  So I guess my little caterpillars are in the process of forming a chrysalis.  It's hard work!  So, so hard!  But it's life-changing!  The movements of a caterpillar creating its chrysalis are barely noticeable, but with each movement something is happening.  My boys are creating the environment where an incredible transformation will take place.  And the hope is that when they emerge, not only will they be breathtaking, they will have wings to fly.