Archive of ‘communication’ category

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.

 

 

 

 

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.

 

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.

 

 

 

Just a Juxtaposition

“Cuddle you, Mommy.”

“Hi, Mommy!”

“Hi, Mommy!”

“Hi Mommy! Hi Daddy! Hi Mommy!”

“I want to sit, Mommy.” (meaning he wants to sit on my lap)

These phrases are said on a daily basis. Some days he greets me about two hundred times. Nope, not exaggerating.

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Bundled up and ready to handle the snow for about 3 minutes

You know how you have those memories of conversations that always stick with you? You can remember where you sat, what you thought, and maybe even what you were wearing.  I have a lot of those. Mind you, I can’t find my phone or keys most days but I remember certain conversations like they happened two minutes ago.

Anyway, I recall having a Facebook “conversation” with an old high school friend.  I believe it started after I posted this entry  . I was reveling in the excitement of hearing Evan say my name for the first time on his own without a model.  She was complimenting my blog and then she followed it with something like, “Soon he will be saying your name over and over and you’ll need him to take a break!”

So she was partially spot on.

He does say my name. A LOT.

He says it sometimes just to maintain connection/engagement with me.  We figured out that sometimes he is so excited to be sharing something with us, but he can’t put it into words so he just keeps greeting us, because he knows it will receive a response and he wants to make sure we are still “with him.” It’s his way of checking in.

So my friend was 110% correct about the repeating.

But I do not need him to take a break.

Believe me, there are things he does that make me weary. Such as turning on and off the baby swing, or asking to watching “funny puppies” on You Tube.  But when it comes to language and communication, I still get excited when he remembers to check in or he asks me to “cuddle you.” (which of course means, please cuddle with him.)

Evan’s language is more delayed than the average 4.5 year old with Williams Syndrome.  He has a large vocabulary, and he understands SO many words.  But he speaks mostly in two or three word phrases and some longer ones that he uses to express is needs.

Again, I forget how delayed he is until I stop comparing Evan to Evan and I compare him to another child.  We were at the dentist’s office recently and there was a little girl who was very excited to share every toy with her mom.  Her mom looked very tired and overwhelmed from whatever her day entailed. Her daughter would jump in her face, show her a toy and babble on about all the details.  The mom was half listening and tolerating her daughter but you could tell she just needed a little quiet.

And I totally understood.

Sort of.

Because I thought to myself, “Wow, at Evan’s age he should be sharing toys with me and telling me about them.” That mom doesn’t realize how awesome it is that her little girl is speaking in long sentences and sharing experiences with her.

Then my mind went to a weird, unfamiliar place. I thought about Melody.

Just hanging out

Just hanging out

I immediately felt guilt and wonder. I was pondering if my little girl would come up to me in a doctor’s office one day and babble on about toys until I ask her to go play by herself because my mind needs a break.  I felt a slight excitement at that prospect with weirdness and guilt mixed in.

I looked at my boy, playing with the musical toys and repeating, “I want to play!” and “toys!” with glee.

We have celebrated and fought for every one of Evan’s milestones. I wouldn’t be human if I didn’t hope that there wouldn’t be as big a fight for Melody.  But at the same time, I wouldn’t change what we have had with Evan for the world.

The juxtaposition of those two feelings is kind of exquisite.

And I still love hearing….”Hi Mommy!” two hundred times a day.

Growing love

Growing love

 

 

Celebrating the Tantrum

There are some odd things we do as parents of littles with special needs.  I guess they aren’t odd to us, but they might be to others.

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Imagine big heaving breaths with this face. Repeat.

One of those things that I find myself doing lately is celebrating the typical.  Specifically, celebrating when my son (who is 3.5 and has Williams Syndrome) has an all out, house shaking tantrum.  Now let me preface this by saying, I do not “enjoy” his tantrums. I get just as frustrated as the next mama who doesn’t like to a. see her child cry, and b. wants him to get his act together and realize the world is not ending because he is putting pants on.

But…….

I celebrate that he is being a three year old.  That he is expressing his frustration over whatever is bugging him at that moment. Lately it has been wearing clothing. He acts as though you are putting acid covered knives on him when you get him dressed. Have you seen this? It is pretty darn accurate. Albeit slightly creepy but so accurate nonetheless.

Another tantrum he likes to throw is The-I-Want-Dinner/Breakfast/Snack-Now tantrum.  I get home from work, and he meets me at the playroom door and his arms go up lovingly and the first thing he says is, “Dinner?” (at 4:45 pm mind you…..) And then sometimes for the next 45 minutes as I try to unpack from the day, and get dinner ready, he will climb into his chair in the dining room and whine and cry for dinner that is taking way too long for his liking.

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Yes, my shoulders might tense up in frustration because I wish he would just understand that things take time, and that mommy can’t have everything he wants for him immediately…

But then…….

I realize, my son is doing something that most toddler-preschoolers do.  Not because he has a genetic condition. Not because he can’t express himself otherwise due to language delays.

Nope.

Just because he is young, and because that is what they do from time to time.

And sometimes, it is nice to experience things that happen just because. They do not happen because of a label, a diagnosis, or a delay.

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I hate pants.

I better go prepare myself, time to get him dressed. Wish me luck.

 

 

Seeing the Diagnosis

“It’s learning time!……………..It’s music time!………………It’s game time!……………………..”

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Probably his favorite memory from the holidays was finding this waiting for him (WITH BATTERIES) at Mom-Mom’s

Anyone with children, or daily exposure to young ones- has probably heard those phrases coming from a few different toys.  Fisher Price has done this very lovely thing and used the same sing-songy female voice to say “It’s learning time! It’s music time!” when you press certain buttons on their toys. Most distinct examples are the Laugh and Learn Puppy and the schoolhouse frame you see in these pictures.  IMG_5481

Evan loves this toy.  No, he LURVES it. With every ounce of his bouncing, joyful being.

Here’s the catch.  I do NOT love it.

In fact, I get a knot in my stomach when I see it in the store or at someone’s house. (please do not feel badly if Evan has played with it at your house, believe me, this is my hang up, not his)

I used to love it.

Evan started a cause and effect game with us using this toy.  He would open and close the mailbox until he would get the right combination to produce the alphabet song.  Then he would glance at us (mommy and daddy) to wait for us to sing the song along with it.  We were so tickled that he figured that out and he was connecting with us through this game. This was when he was about 17 months.

Notice the abundance of musical, electronic toys.  This was before we visited Dr. Mervis and were advised to get rid of all the toys that had on-off switches and incorporate more “old-fashioned” toys. This suggestion was made to encourage Evan to do more engaging play that required him to use his imagination and also communicate with us when he needed help.

Herein lies the title of this entry.  When Evan encounters this toy, or any toy that is similar in fashion- one that has a switch that turns on music, action, or lights, he becomes entranced and very involved in the toy.  It is difficult to get his attention and even more difficult to elicit any communication.

My heart literally ached on Christmas afternoon when my dad’s wife (he calls her Mom-Mom) came in the room to greet Evan and he didn’t even look at her. Not a glance. He was busy roaming around the schoolhouse frame and turning on and off those switches he remembered so well.  She hugged and kissed him anyway and went back to cooking.  Honestly, she did not seem to be bothered by it at all. She was happy to see him and thrilled that he was happy.  And there I sat, knot in my stomach, blinded by the diagnosis. Blinded by the lack of engagement that we have been working so darn hard to increase.  I didn’t see my happy son who was being pleasant, even-tempered, and occupying himself with a toy he loved. I was seeing the disability, the developmental delays. The very thing I preach about looking past.

There are moments, days, weeks, that can go by where I am thrilled by Evan’s progress, excited to discuss Williams Syndrome with friends, touched by the smiles that Evan elicits from strangers.  Then there are days like this. When I wake up, filled with hope and expectations of a wonderful day spent with family. And by the end of the day, Evan is in the backseat of the car, scripting away, “It’s learning time!” It’s music time!” and I have to fight back tears. The word defeated feels accurate and awful at the same time.

(As I type this I can hear him singing along with his beloved Signing Time DVD, which also repeats, “music time, signing time, story time,” etc over and over. He does love Rachel. I’ve often said he would run off into the sunset with her or with the ladies from Baby Babble.. but that is another story.)

A quick moment I grabbed

A quick moment I grabbed

Lately I have been having a more difficult time embracing the joys, embracing the progress that I blogged about so recently. I know it is due to the holidays. Due to the stress I was under at work this past month.  Due to the hustle and bustle of non-stop gatherings, entertaining, and changes in schedule that occur for everyone this time of year. I struggled with whether or not to write about it.

Because I do strive to see the positive slant on things.

I do realize how incredibly blessed we are.

But it would be a disservice as a writer (and a deeply sensitive one at that) to ignore the ugly truths that creep into our lives.  To not acknowledge that being a parent of a child with special needs is hard. Capital H. Hiz to the ARD.

Being a parent is Hard.

Being a human being is Hard.

But being honest about it is freeing. Knowing that the Hard is worth it.  Knowing that there are plenty of others out there who are also dealing with the Hard. And we don’t have to pretend that it is easy.

We just have to admit that this happens too:

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and this:

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and this:

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Thank goodness there is also Joy. With a capital J.

We’re Engaged!

Well, we’re married….the engagement happened a good 7 years ago. But it will make sense shortly.

Sorry friends, the whole plan to write one post a week sort of evaporated a long time ago, didn’t it?

Sigh….

But I know you understand.  This working mom thing, is no joke. As I have mentioned before..here and here.

Too busy doing things like this.

Just too busy doing things like this.

But that being said, things are going really really really well.

Evan is loving school. And I think school is loving Evan. (at least that is what they want us to believe to keep us quiet…. 🙂 ) just kidding….sort of.

Seriously, he is just one of those kids that NEEDS school. He thrives on it. Thrives on the interaction, the structure, the constant activity.  Lordy be, the constant need for activity.

“Does he nap?”

“He must be EXHAUSTED when he gets home from school the way he goes goes goes all day!”

Yup. If I had a nickel for every time I heard one of those… Nope, hasn’t napped on a regular basis since he was about two. And when he gets home from school, he is still raring to go. In a more overstimulated-body-is-tired-but-mind-wants-to-keep-moving kind of a way.

But his teachers get him. I was so worried that they wouldn’t. That with the other kids, the two different classrooms, that it would be hard for Evan. Well Pshaw says Evan.

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As usual Mom, I got this!

We had some worries in late August about Evan’s engagement with his peers and the adults in his life. If I am being honest, I was worried that the bubbly, overly social side that we had become quite fond of and accustomed to- was staring to dissipate.  During the summer, his attention span had become much shorter, and his interest in objects had increased while his interest in socializing and engaging with folks seemed to have lost its luster.

I don’t think we even realized it was happening until we received some key advice from a very well regarded doctor who is one of the few experts in Williams Syndrome.  She noticed it right away and encouraged us to go in a different direction with Evan, instead of worrying about any academics or even the fine motor school prep stuff- pour all our efforts into making Evan remember how rewarding it can be to engage with his peers and family.

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My heart was SO full.

I remember feeling kind of lost, like maybe this was just our new reality with Evan. That it would have to be okay if he didn’t want to play with me or even just be with me without being “taught” to do so.

I needed to slow my roll, as my very dear friend Talia would say.  Because it is now November, and I barely even think about it anymore.  Evan will bring toys to me, just because. JUST BECAUSE.  I mean….it’s hard to explain why that is so huge unless you know what it feels like to never have your child do that. He only would bring me things because he needed something or because he wanted me to manipulate the toy in some way.  But now he just wants to share.  He calls for me from the playroom. From his crib. From the front door when I leave in the morning. He asks for me when I am not here. These are all things he was not doing this summer.  He will come over and say “Hi mommy!” and look at me with those eyes and I just melt.

These eyes.

These eyes.

This morning in church, he sat to my left in his stroller. Munching on some veggie straws. I do long for the day when we can have him sit in one of the chairs with us but for now, if we want to participate in any part of the service where Evan is there, the stroller it is.  Two of his favorite songs opened up the service.

“Be Thou My Vision” and “How Great is our God.” I stayed seated while the congregation stood and sang in his direction because I wanted to see if he would sing with me. Instead, he stared at me with those eyes. His eyes twinkled with joy. He would squint every few lines and giggle at the memory of a song we sang when he was just an infant. But for almost every last word of each song, he locked right on my eyes and wouldn’t let go.  I almost broke down in tears because I was so happy.  He wasn’t watching my mouth because he liked the sounds (which he known to do). He was looking at his mama.

Engagement.

Connection.

Things that can’t exactly be taught. But they can be fostered. And foster, gosh darn it, we will continue to do.  Because it is what keeps my tank full. And hopefully, Evan’s as well.

Full. To the brim.

Full. To the brim.

 

 

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