“This is not what I expected, either.”

“He’s 6 years old, he should be able to walk the block without complaining or flopping.”

“Trick-or-treating should be fun, not stressful.”

“We should be able to walk through Target together and not have to put him in a too-small cart so he doesn’t get away from us”

“Field trips should be such a fun day away from school….”

These thoughts either go through my mind or they cross my lips far too often.  Combine our lack of child rearing experience (prior to E), our expectations, our own childhood experiences, and our observations of other children of similar age to Evan.  Mix them all together and then line them up against who Evan is…..and how he is wired.

At a town wide Halloween festival. This was the extent of his happiness.

Evan loves to socialize. He loves to say hello and get a response out of strangers and loved ones alike.  But…he likes to do that on his own time and on his own terms.  So we find ourselves planning an outing- where people familiar to Evan are going to be present. We think, he is going to love this, he loves ____________ (enter name here).  We tell Evan about this excursion before we leave. He asks with anticipatory anxiety, over and over, if we can leave, if we can go to the exciting place. 

We get to said place, and things will change rapidly.  Evan will get a dazed look on his face, and he will push past the familiar people who are so eager to interact with him. He will exhaust every corner of the house, yard, etc- looking for the toys he loves. Or looking for things that make noise, music, anything of that nature.  The content, giggly boy that we left the house with is now very reserved, and even agitated. I might suggest to him to go to a room where his favorite snack is, and he pushes my hands away in a huff. He might even drop to the floor.

Then he looks up at me with those sparking blue eyes and says, “Sorry mommy. I’m sorry mommy.”

I know your heart just broke. Mine often does too.  But he does say “I’m sorry” for many different reasons and emotions. It is a go-to phrase for him right now when he feels any type of discomfort or confusion. 

But in those moments, it feels like he is saying,

“I’m sorry mommy. I’m sorry that I disappointed you. This is not what I expected either.”

Ouch. 

He wanted to roam the house freely without abandon. He wanted to talk to people on his own terms, not when they wanted to talk to him. Social cues are foreign to him.  Even when explicitly taught, it is tough for him to remember that you walk into someone’s house and greet the host before walking further. Evan often will make a beeline right for the bedrooms. Which of course is quite rude and not appropriate.

But to E- it is the gold mine of fun! Fans, alarm clocks, remotes, you name it. 

The past few months have felt very hard but very necessary in my journey as Evan’s mama.  I have picked him up off the ground more times than I would like to admit. I have been smacked, ignored, and I have been hugged harder than I have been our whole relationship. I have waited him out for 30 min + when he has refused to do something I asked.

We are closer than we have ever been. 

I think this is due to several things.

A huge factor is my dear husband’s involvement.  We are a team when it comes to doing what is best for Evan.  The summer proved to be one of the toughest for me in all my 39 years.  Evan went through a medicine change for his seizures and with that came a language increase but also a huge behavioral increase.  Melody is a spirited, amazing, pain in my rear most days. Handling Evan’s struggles were tough when she was screaming that I gave her the wrong color plate. Todd made sure to give me ample opportunities to get out of the house when I needed to.  He didn’t get upset or try to fix it when I cried. He was just there.  When things kicked up again during the start of the school year- he came to me and said he felt like we needed to be firm and consistent with Evan but we needed to be as positive as possible.  Keep things light, avoid getting into a battle with Evan, because the negative is as reinforcing to him as the positive. Actually, it is probably MORE reinforcing. Unfortunately.

One of the biggest shifts for me, has been my understanding of Evan. It grows deeper every day. I am trying really hard to put myself in his shoes. I am swallowing my pride more, and not feeling crappy about it.  It is okay to say no to a birthday party because I know it will be super stressful for both of us. Even if that means he misses that peer opportunity.  Even if that is one more playdate that won’t be scheduled. The strain that it causes him, and our relationship is not worth it to me. 

It is also okay to take risks.  Try walking through a grocery store with E without a cart.  Try going to a friend’s house that has the motherlode of Fisher Price toys. 

Our expectations might not always jive.  Our experiences are going to be completely different. 

But it is about trying to meet him where he is. While also giving myself a break for not always finding that easy. 

Yup, I’ll work on that this week…and next.

And for the rest of my time as Evan’s mama.

 

Never underestimate me, mama

Lying in bed with Evan tonight- (for the first time in a long time because of my injuries), I found myself feeling guilty.  I kept trying to engage Evan in conversation. 

M- “I heard you were practicing for kindergarten graduation. That is so exciting.”

E-“Hi, mommy! How are you? How are you? How are you?”

M-“You get to go up on stage and sing songs.  I wonder what songs you get to sing.”

(using declarative sentences instead of constantly questioning him is hard work, but it has come more naturally with time)

E-“V Tech alphabet train, the chug a lug song!”

M-“Hmmm….I don’t know that song, where did you see the alphabet train?

E-“V Tech, V Tech. Hi mommy! How are you?”

This is where the guilt crept in. The guilt because I was feeling dejected.  Dejected that I couldn’t get Evan to have a reciprocal conversation with me.  Just yesterday I had a conversation with Melody that lasted about 6 or so exchanges before she tired of me. 

And what did I feel? a hint of guilt…because I wish I could talk to Evan that way.

I wish he would WANT to talk to me that way. 

But maybe he does. 

Or maybe more accurately, maybe he is.

He is talking to me the way he needs and wants to. It just doesn’t fit my communication mold.

Right before I got up to let him go to sleep, I started singing,

“Lullaby, and good night.. little Evan….”

The next line as you know is “sleep tightttt”

Evan interjected, “wake uppppppp” and he sat up.

My guilt turned into a wave of warmth. 

This kid. Just when I think he isn’t paying one bit of attention to me.  He changes the lyrics in the song to communicate to me that “No mommy, I do not want to go to bed right now, stop trying to distract me.”

I am constantly telling people that there is much more than meets the eye with Evan.  Sometimes I just need a little kick in the pants to remember that myself.

 

 

 

 

Rain dancing.

“Life isn’t about surviving the storm. It’s about learning to dance in the rain.” -Unknown author

Mother’s Day 2017 was yesterday.  My mama stopped by and gave me a bracelet with that quote on it. 

Rain dancing.

We’re not touristy at all. (after hospital stay)

I didn’t realize until I read the bracelet that I have gotten pretty good at rain dancing.  I know that in general I am a glass half full person.  It is just who I am.  I can’t dwell on the difficult or the Hard for too long. Sometimes that isn’t the healthiest choice but I’m working on it.

One of the last photos I took before the accident.

Sometimes it catches up to me.

Sometimes I watch others get frustrated, angry, sad, infuriated; and I feel myself get frustrated because when do I get a turn to feel that way? But that is my choice. I am trying to learn to allow some anger, some sadness, some frustration into my emotional arsenal. 

But rain dancing. That I can do.

But I don’t realize I am doing it until later.

In front of a volcanic crater lake. NBD.

So we went to Iceland. My outdoorsy, mountain loving, traffic hating, lovable hunk of a husband talked me into a week long trip in the most sparsely populated country in Europe.  And I was so glad, and continue to be glad that we went.  #icelandisstillnice

For the ten of you who read my blog who aren’t family and friends- here is a brief synopsis of what happened on Day 5 of our trip.

We had reservations to take an one hour horse back tour with a guide across the countryside of Iceland.  Our son receives hippotherapy twice a month and I have always loved horses.  Todd had never ridden and knew it would be special for me so we booked it.  We dressed in these huge rubber trousers that were similar to what fireman wear, and we set off on our beautiful thick-coated horses with our young but experienced guide.  About 5 min into the trip, we both commented how well trained the horses were, how easy they were to ride, and how much fun it was.  We all stayed in a nice line – the guide, then me, then Todd.  The guide asked if we minded doing a slight trot with the horses and of course we said sure, so we trotted a bit.  It was fun but when we slowed down, I could feel a difference in my horse.

He wanted to keep trotting. He was very close to the guide’s horse and if I tried to pull the reins back, he tussled a bit with me.  We stopped to take pictures and then my horse started walking off to the side a bit. I tried to lead him back over, and for a split second it seemed like he was going to obey but then something just changed.

No loud sounds, no strange movements by me, the horse just started to run.  My first instinct was not to use a calming voice like she had suggested because of course I was startled and frightened. But then I remembered and I tried to use the techniques she suggested.

Terribly unflattering photo of my first time sitting up in a chair at the hospital

He wasn’t having it.

He took off like a shot and the rest is history.

History that changed me.

History that brought on more rain dancing.

What followed was a six night hospital stay at one of the two hospitals in Iceland, in the beautiful town of Akureyi.

I received/suffered/endured (not sure what the right wording is) five fractured ribs, a punctured lung with a pneumothorax, and a broken sacrum.

Five broken bones that cannot be put in casts. Cannot be set. And the sacral bone is what I make contact with, every time I sit down. 

View from my hospital room

It was scary. I’m not gonna lie. Lying on the ground after being thrown from the horse, coughing up blood. I couldn’t turn either way because my broken bones are on opposite sides of my body.

It was scary. 

But I knew I would be okay. Something kept me calm. Something told me that it wasn’t going to be fun, but it was going to be okay.

The handsome Icelandic EMTs who sat with me in the ambulance, telling me how much time was left until we got the hospital, they told me it would be okay.

The nurses who greeted me, who sat beside me in the ER while they tried to figure out what was broken, and how serious everything was. They kept me calm. They talked to me like everything was okay.

They know how to rain dance.

Helga, the young nurse from a nearby town in Iceland who had attended nursing school in Chicago. She gave me a foot massage and chatted with me about every day things, just to keep my mind off the pain.  She helped me brush my teeth and wash my face myself for the first time after being hurt.

She knows how to rain dance.

Skyping from far far away…

“Take a car ride to Iceland?” said Evan one night when we Skyped. My heart broke but there was also a part of me that felt such joy that my little guy missed me so much and wanted us home. We have worked so hard on keeping him engaged and connected to us- and he really missed his Mommy and Daddy. 

It was very hard to dance in the rain when I thought about my kids from my hospital bed- but my friends and loved ones kept texting, emailing, calling, sending cute little videos so I could hear their voice and see their smiling face. (I’m looking at you Talia!) In times of strife, you really do realize the love and light in your life. 

And then we finally came home. After a 5 hour car ride to Reykjavik and a six hour flight home, we came home to a clean home, and sleeping, very loved on children. Thank you Mimi, Pappy, Gran, and GrandRich!

Chilling with my girl

For the past 2.5 weeks, I have been setting up shop in my bed, regularly icing my fractures, trying to stay comfortable, and walking around when I can.  I went from a wheelchair to a standing high walker, to crutches, to a slight limp.

Rain dancing was really hard the first week I was home when I couldn’t sleep because the pain was so intense. When I had to get an elevated toilet seat because I couldn’t bend over at all. When my son only wanted to climb on my lap and no one else’s so his behavior became erratic and he acted out. 

But somehow we got through it. And one day I looked to my left and both kids were in bed with me. Melody in the crook of my arm and Evan lying next to her.  He looked up at me and said, “Hi mommy! Can I go in Mommy and Daddy’s room? Can I cuddle you?”

He asks questions that he already knows the answer to as a way to communicate and stay engaged with me.

It hit me all at once. Without realizing it, I had been enjoying my time with both kids immensely. Take out the responsibility of keeping up with housework, teaching, and all that was left was a focus on my recovery and the time spent with family.  I felt guilty that I couldn’t do the dishes or walk down the basement steps to do the laundry. I hated not being able to take the kids were they needed to be.

Enter rain dancing.

All that was expected of me was a focus on my healing and when I felt well enough to sit with the kids in bed- this awesome thing happened. They both figured out ways to spend time with me in bed.

Evan reading with his head in my lap (ribs protected by a pillow)

Mother’s Day music time

Just last night, Melody snuggled up next to Evan and just said to herself, “I love you, Evan.” and closed her eyes and smiled. 

Those moments are hard to catch when I am caught up in cleaning up after the kids at night, making lunches, laundry, and my mind is 153 different places.

I want to remember this.

I want to remember what it feels like to just focus on family. Just focus on the kids, my husband, my mom.  Whomever is with me at the time.

I know that will become difficult all over again when I go back to work in a few weeks and more responsibility is back on my shoulders. But I do hope that I can remember what it felt like to dance through the raindrops these past few weeks.

**Update:

after writing this earlier today- Evan had a seizure, after having one last night. He had four in one day last week.  I felt myself tense up all over. The worry is back, the concern over if we are medicating him correctly. The neurologist is talking about more aggressive meds, new tests….

Rain dancing is really really hard when these things crop up.

Just being real.

But tonight Evan put his head on my stomach and listened to the digestive sounds it was making and we had a huge laugh about it. I used to do that with my mom growing up, and it cracked me up. He likes to play with the word and pretend to say the ch sound at the end so he kept giggling and saying, “stomach (with the ch digraph sound)” and then “how are you?” with a big grin on his face.

I’m going to think about the stom-itch sounds instead of the seizures.

At least for a little while.

 

 

Oh…….wow.

This is the post that a friend told me I would write eventually.  The one about having a child with typical development following a child with special needs.  The one that has me simultaneously in awe, and slightly heartbroken.

In a nutshell, a hard post.

This kid.

This kid.

This morning I decided to organize Melody’s clothes. She has a few bins of hand-me-downs from friends that are willy nilly all over her room and it was high time that I went through them.  On the dresser was a Baby Einstein book with buttons on the outside. When pushed, they play short snippets of classical music.  Evan had a few of these books. I remember his adoration of them. I remember being in a store and giving him one of them and he would play with it for the entire store visit. This was Evan’s norm.  He could be given a toy- especially a musical or push button one that had some type of cause and effect mechanism and he was good to go. I could go to the basement to do laundry while he sat on the floor of his pack and play at 18 months playing with a musical box, pressing each side over and over, laughing, singing, etc.

So today, when I ripped off the plastic on this book for Melody, I thought, “Hmm, this will be perfect. I will give her this book, she will be so excited to play with this new electronic toy- that I will be able to organize and she will be happily occupied. (and without T.V! score for Mommy!)

I gave it to her, and she smiled through her pacifier stuffed mouth and tapped the book on the cover while looking at it quizzically.

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I turned to my pile of clothes and started sorting.  A few minutes later I noticed M walking around her crib.  Thought nothing of it.  Still sorting.  Then a few min after that she was in her closet trying to open boxes.  Few min after that, she was crawling in my lap, trying to get me to put a headband on her head through several gestures and vocalizations.

Oh…..wow…..

That musical book is not magical.

Melody is not caught in its spell like Evan was. (and might still be if given the opportunity. do NOT mention Fisher Price to that kid)

She is more interested in playing.

interacting. keeping joint attention.

throwing fits when she doesn’t get her way.

doing what 14 month olds do.

Not what my child with Williams Syndrome and autism did at that age.

I have these moments a few times a week.  Actually probably a few times a day but I don’t dwell on every one.  Melody is not a baby genius. She is not advanced. She is just developing at a typical rate.  What is true is that things come much easier to M than they did for Evan.

On one of our trips to see Dr. Mervis, I remember her saying that Evan really needed to practice dropping objects into containers. I think he was about 18 months at the time.  He would hold things over a box or a bucket but not let go.  This was HUGE in the eyes of the early intervention evaluators.  I had never thought about it before they pointed it out to me.  I can remember like it was yesterday, the night after we saw Dr. Mervis- Evan dropped his elephant toy into one of the hotel room drawers and we all celebrated. It was a massive milestone and we lamented that he waited until AFTER the research study to do it.

I can’t remember the first time Melody dropped an object into a container. It’s as though she has always done it.  I can even ask her to retrieve a toy and she will crawl behind furniture to get it and bring to me.

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Climbs. Every. Thing

This difference in development is both fascinating and tough.  I constantly am asking Todd, “Did you see her do____________??” Did you hear her say ___________? Did you see her point to her body parts?

That is the fun, exciting part. The hard part is the little tiny punch in the gut I get each time I realize what Evan wasn’t doing at Melody’s age. I feel a weird guilt that I didn’t know any better but also……………. relief that I didn’t know any better.

I have heard that the really hard part is when your younger child starts to move ahead of your older child developmentally.

Well, we’ll cross that bridge when we come to it. For now, we are just enjoying our kids and doing our best to celebrate all their achievements and not get caught up in every “Wow, I get it…..” moment that occurs.

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Hey Mom, you can be proud of both of us!

 

How Great Thou Art…Through the Years

I know I have said it about 25 different times in my blogging lifetime. (okay maybe 250 times….)

But the way in which Evan hears music is not like the way I hear music.  And I am an incredibly sensitive, emotional person.  A canary, as Glennon Melton likes to call us.

But Evan hears music in his soul. In his heart. Not just with his ears. In fact his ears are probably the last place that hears the music.

When he was a young toddler, I noticed that when I would play hymns for him, he would become entranced.  The more climactic the song, the better.  Sometimes he would squeal for more. Sometimes he would sob at the end.  Possibly because it was ending, possibly because the song swelled and his little sensitive heart couldn’t take it.. I’ll never know exactly.

Here he is at age 2 watching Carrie Underwood and Vince Gill sing “How Great Thou Art.” You’ll notice the legs kicking, the excited rolling of his arms, and the stare when he realizes the song is almost over.

 

About three months later, here he is following a hippotherapy session singing in the back seat.  A child who was barely saying single words clearly, was able to sing the chorus to a hymn.  (excuse the darkness, you can hear him clear as day)

And finally, I played him the same video with Carrie U and Vince Gill today.  I had to splice together a few bits and pieces of his listening experience.  We had Spotify on the TV so he just had the album cover and title on the screen.

The video caught it off at the end, but Evan looks at me with his glistening, teary eyes, and said, “How Great Thou Art again?”

I just wish for one minute I could be inside his complex mind and see what he is seeing and feeling.

“Then sings my soul….”

 

 

Children Will Listen…..

Careful the things you say
Children will listen….

So it’s no secret I am a huge Broadway musical fan.  Possibly more of a secret is my love of Josh Groban.  Recently I attended his concert and was in lala land for a few hours listening to his velvety voice and his witty repartee. What surprised me was how emotional I felt during a few of his songs.  One teary moment was due to a connection the song “Bring Him Home” from Les Miserables has with my late father. But the one that really got me was “Children Will Listen” from the Stephen Sondheim musical, “Into the Woods.”

Careful the things you do
Children will see…. and learn….

I have been really struggling lately with Evan’s delayed language development.  Don’t get me wrong. He has come LEAPS and bounds from a few years ago.  He is speaking in short phrases, and he has the capability to speak in longer sentences but it is hard for him to find the right grammatical combination. So he chooses shorter chunks because it is easier and more effective.  A few years ago I would never have thought he could ask me clearly for a certain food, or tell me that he needs to use the potty, or tell me that Melody is funny.

Alas….the perspective of looking back and realizing how far he has come does not come into play most days.  Most days are filled with moments where I feel my stomach twist because I hear a child ask his mom, “Does Evan talk mom? He barely says anything.”  Moments where I watch an adult struggle to connect with Evan because he keeps saying “Hi!” and repeating the same phrase over and over.

But something really struck me at that outdoor concert the other night.  I had a long conversation with my dear friend about Evan and his progress, challenges, strengths. And she said something to the effect of, just because his expressive language is delayed, he UNDERSTANDS. He is listening to everything.  She mentioned how she was trying to engage him in a conversation about his time at school that day, and he just kept repeating the same thing but she said his eyes said a different story.

Children may not obey, but children will listen
Children will look to you for which way to turn…

And she was so right.

He is always listening.

(Well, maybe not when he is on his Ipad and he doesn’t want to come to dinner.)

But children are always listening.

For better or worse.

Think back to your childhood. The memories you have of biting words a peer said to you on the playground.

A phrase your parent uttered in a moment of anger and frustration that you still hold on to 30 years later.

After a tussle with Mommy over leaving the speech therapist's office

After a tussle with Mommy over leaving the speech therapist’s office

Look at his eyes.

They speak volumes when the words couldn’t come.

We went to the zoo recently and I was not looking forward to it because in the past, it has been hard for Evan to connect with the animals because of the distance.  He just didn’t seem to be a “zoo kid.”

But then this happened:

Petting Zoo

Petting Zoo

And not the rough petting he does with Zoey, our very patient choc lab mix.  He was soft petting and smiling and quietly connecting with this goat.

Post petting

Post petting

Just taking it all in. He didn’t want to leave. The complete opposite from years past where he would just run from trash can to trash can to flip the lid or play with the water fountains.

We asked him the goat’s name and he said, “Goaty the Goat!”

HUGE, people.

MASSIVE.

I didn’t think the zoo would matter to him.

Adults need to listen too.

Children will see….
And learn….

Guide them, but step away

Children will glisten…..

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I’m going to try harder, buddy.

To speak more carefully.

To listen to what is not said.

To let you glisten.

To trust.

 

Look at me, Mama

Evan and our family has been a part of a research study out of the University of Louisville since he was 18 months old.  I’ve talked about it here, here, and here.

A part of that study is a monthly phone conversation that I had with Dr. Carolyn Mervis, the principal investigator in the study.  I had multiple forms to fill out monthly, to update Dr. Mervis on Evan’s speech and language process.  Some months I looked forward to the call, because I was excited to share the new words Evan was using.  Some months I waited until the very last minute to do the forms because I knew he hadn’t made much progress that month, or maybe our lives were crazy that month and I hadn’t noticed any big changes. (ie: Melody’s birth, one of my miscarriages, etc)

Some items would stay unmarked for months, sometimes years, “Does your child use his/her index finger to show INTEREST in something, not just to ask for something?”

Nope. Still doesn’t really do that.

But there was one item that puzzled me month after month.

The item said, ” When your child is playing with a toy, does he/she look at you and then back at the toy?”

Huh?

I remember admitting to Dr. Mervis one month, that I didn’t quite know what that looked like.  I’ll never forget what she said. “You’ll know it when you see it,”

Ok sure, I’ll just figure it out on my own.

Well, until a few months ago, I don’t think I really knew, but I do now.

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Look at me, Mama!

I know now because Melody does it, all day, every day.  She crawls around playing with toys, standing up, cruising, playing again, all the while, she looks to see if I am paying attention.

So that is what she meant.

Evan looks at me. We cuddle together, we sing, we play rough house games and we check in all during those times.  But “social referencing,” or checking in with your play partner, loved one, etc while interacting…it just doesn’t come as naturally to him.  He does it more now, especially when in a situation where he is not familiar. He might look to me, because he needs comfort or security.

Melody does it because she is a typically developing 9 month old who wants to make sure I am paying attention. Just because.

Sometimes this feels amazing, exhilarating almost.  To know that she is “on track,” that she wants to make sure I am there.  Something we still “work on” with Evan. We have to be intentional about encouraging referencing and the motivation behind it.  To know that it won’t be so hard with Melody. (not that she won’t have her own set of hard)

Sometimes I feel a pit in my stomach. I feel guilty that I am excited. I realize how incredibly hard Evan works for all his milestones.

Melody is standing on her own, and almost walking at nine months.

No hands!

No hands!

Evan walked at 25 months.  I can remember it like it was yesterday. It was so exciting.

I know….they are different people. And not just because of their chromosomal makeup.  They are different genders, different personality types, etc.  I shouldn’t compare.

But having a child with special needs born first, it is hard not to.

I remember being pregnant with Melody and talking with other friends who had their child with Williams Syndrome first, and than a second child without special needs.  They said it would be so different.  Not bad, not good, not better. Just different.

I couldn’t agree more.

But I will say this, having the two of them together, is way better.

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Bro and sis, checking out the geese

Sigh....My heart.

Sigh….My heart.

 

 

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

Though She Be But Little…….

I pray she will continue to be fierce.

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So far, our Melody has been sassy, strong, outspoken, happy, did I mention strong?

Two years ago today, I posted this.

My world was broken. My heart was sore.  My soul felt very depleted. I was sure that our chances of having a sibling for Evan were extremely slim if not gone.

Over time I came to accept that, and embrace the family of three that we had become.  But there was always a little voice inside that whispered, “a sibling would be so good. for everyone.”

Fast forward to the present. We have a thriving almost seven month old little lady.  She makes her presence known and her development is one of the most amazing things I have ever witnessed.  Because of how hard Evan had to fight for each milestone, it just blows me away how rapidly things are happening for Melody.  I am torn on a daily basis between shouting how excited I am from the rooftops, or feeling compelled to compare this experience with Evan’s first year with each new developmental leap she makes.  I am so glad we had our children in the order we did. Evan’s experience was completely his and his alone.  I had nothing to compare it to, so I didn’t feel the delays as heavily as I might have, if he had an older sibling.

I felt my eyes sting with tears the other night.  I was reflecting on how I prayed nightly while pregnant with Melody. I prayed that Evan’s sister would fiercely love and defend him.  That he would be her hero and they would be good for each other.

Even though she now takes things away from him and she loves to yank his hair, you can see adoration in her eyes.  I hold her up to look at his school picture before he gets home from school and she giggles and kicks her legs all around in excitement.

Melody has her whole life ahead to decide who she is, and who she wants to become . But for now, I will revel in their relationship.

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H is for Holidays. And Hard.

I love holidays.

As a child, I would have countdown calendars, I would beg my mom to put out the decorations weeks and weeks ahead.

I would be giddy with excitement and riddled with anticipation for the month prior.

Will the Easter Bunny come? How many eggs will I find?  What songs will we sing at church on Christmas Eve?  What time am I allowed to be up Christmas morning?

During pregnancy and in the early years with parenthood, I continued to be excited at the prospect of including our children in our traditions.  Our family meals, board games, gift opening, egg hunts, the list goes on.

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Unfortunately, I still have a fondness for holidays but I no longer am riddled with excitement for weeks prior.

Instead, I find myself dreading the family meals, worrying about gift time, anxious about family gatherings.

Holidays are a time where I find myself seeing the diagnosis instead of seeing my son.

A time where he is surrounded by cousins, children who are the same age or younger, and they are doing and saying things far beyond his development.  It used to upset me more because it would be hard for ME to handle but I always thought Evan was doing fine with it.  He would play with the electronic toys, happily flitting from one to the next, not worrying about his family members, happy to play and do his own thing.

But that has changed.

It seems now Evan is more aware of his environment. More aware of his “sticking out.”

Not in the same way that I might feel like I don’t fit into a group.  More that he does not understand why everyone is running around playing pretend games. He doesn’t understand why we seem so adamant that he do an egg hunt. I can just see in his eyes the thought, “Why are mommy and daddy so upset that I don’t want to do this? What is the big deal? I just want to play with the toys that are easy and fun for me. They make me happy. Let me be happy.”

Damn it. That is HARD.

Choosing when to include your child because you think it is important for him, or is it because it is important for YOU?

Because of Evan’s delayed speech development, we don’t always know what he is thinking or feeling.  He didn’t say he didn’t want to do the egg hunt. He just kept making a bee line for the door and requesting to go back in the house.  But later on at the party, I knew exactly what he was thinking and feeling. I caught his gaze from across the room.  He was playing with some electronic toy and staring off into space and I could see it written all over his face. He was exhausted and tired from the noise, the rapid movements, the conversations all around him that he didn’t feel he could or should be a part of.  I went over to him, sat down next to him and he crawled into my lap, “Cuddle you, mommy.”

My heart sank but I also felt this strange relief.

Relief because he told me what he needed. He needed comfort, closeness, a sense of familiarity in a dynamic environment that overwhelmed him.  12186378_10208003238498964_5136476171225720603_o

Once again, through a difficult situation, a little light shines.

“There’s a crack in everything, that’s how the light gets in.” -Leonard Cohen

Holidays will continue to be tough sometimes.

Holidays will continue to have joy sometimes.

Thank goodness for cracks.

Thank goodness for cuddles.

 

 

 

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