Archive of ‘communication’ category

Walk the Line

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I feel physical pain when I look at this picture.

This is hard to write about.

Tonight I walk the line.

Tomorrow I probably will too.  I might stay on one side, linger for a little while, and then I will go back to the line. Teetering ever so slightly, trying to keep my balance.

I walk the line between complete acceptance of Evan’s Williams Syndrome, almost to the point of celebration- and complete worry, disappointment, and concern for his differences and how they will affect him throughout his life.

When Evan giggles and jumps in his car seat peering out the window, simply thrilled to be waiting for me to bring in groceries and to see me peek out of the door to see him- I celebrate his WS. I celebrate that he is filled with joy, simple, unadulterated joy about 80% of the time.  When he whispers “I la you” before I leave his room at night- three words we have worked on for over a year, I celebrate.  When the director of his preschool writes me a note, thanking ME for allowing them to be Evan’s teachers because of the light he brings to their lives- I celebrate. (I also blubber like a weepy fool- but that is another story)

When I watch video of adults with WS lamenting how difficult their high school experiences were due to bullying, I am concerned.  When I hear an adult with WS say to a newly diagnosed child’s father, “I am so sorry to hear she has WS, it can be really hard,” I hurt.  When Evan greets someone with a happy “Hi!” and then repeats it over and over and over no matter how many times the person responds, I feel a little weird inside.  I feel guilt because of course I know he means well, he just wants the positive interaction- but I also know the recipient is wondering how to respond. And then I start thinking about what will happen when he is in middle school and he greets others with no abandon.  When I listen to other children Evan’s age and I realize how far behind he is with speech and language, I can feel disappointed.  I live in a little bubble sometimes, where Evan’s progress is only compared to Evan’s progress.  Until, it’s not anymore.

When I hear E singing on the monitor, singing, “The Water is Wide,” and then humming the parts where I hum because I do not know the lyrics, I feel joy.  Pride that my son has Williams Syndrome. That he has an emotional connection to music that even I cannot comprehend. When I talk to others and educate them about WS, I enjoy talking about it, I feel pride in every detail that I share.

But then I can be quick to say, “But don’t forget, Evan is not defined by his diagnosis. He is Evan first, and he just happens to be missing a 25 or so genes out of over 20K that we each have. It is just a small part of what makes him Evan. ”

I just keep walking that line.

The line between celebration and worry.  The line between pride and guilt.

I can say that I am on the side of celebration far more than I am on the other side. I feel very blessed for that to be true.  But the other side exists. And it can be an ugly, dark spot to step into.

That is why I walk the line.

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Striving for Celebration

 

 

Baby Pool

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Where has the time gone??

My stomach lurches.  My back is dripping with sweat.  I lunge after Evan time and time again to make sure he does not run down the aisle of the theater. I hold his hand and let him lead me to the lobby doors.  He loudly shouts, light! light! light! and insists on getting to the “light.” Against my better judgement, I take him into the brightly sun lit lobby and let him run around, making sure he doesn’t touch the trash can, go up the steps, touch the other patrons, run out the front door, you name it.  I feel my lip trembling and the warmth of tears touching the corners of my eyes. I feel jealous of the other parents sitting in the theater with their child who is happily watching the show.  I then feel guilty for feeling jealous. This is his field trip, and not only that, but it is a live musical performance.  I had been incredibly excited for this day, to share something I love with my son who has an uncanny connection to music.  I was SURE he would love the experience.  I hear familiar music ringing in the background.  A song Evan knows!  I was sure he would be happy if he heard the music, I was sure I could sit back down in the seats and join his class for the last five minutes.

I was wrong.

I tried to sit, and E crawled up my chest, and tried to get away from me yet again. He carried on loudly, protesting and wriggling all over our laps. Todd leaned over and said that we might as well leave, since it was almost over anyway and Evan clearly did not want to be in the seats. We were fighting a losing battle. We scrambled to gather up our things and get out of there with some sense of dignity.  The parents, teachers, and children from E’s school watched the show intently, with popcorn bags and drinks in their laps.

His car seat buckled, his bags strewn about the back of the van.  I had to go to work to get in a half day and Todd was bringing him home.  I kissed Evan goodbye and felt my eyes film over.  Todd asked if I was okay but I couldn’t muster the words. I realized that my reaction didn’t seem to match what had happened. Evan is a two and half year old. Two year olds don’t necessarily want to sit for any length of time. Why did this hurt so much?

I walked through the stinging cold wind and felt  my cheeks burn. My stomach was tied in knots. All I wanted to do was sit alone and cry.  It had been a while since I felt that way.  Since I felt like we were outsiders. There was a sea of happy, healthy children who could watch a show, communicate their needs clearly, and be engaged.  And Evan was hanging out in the baby pool, splashing about, not caring if he was a part of the sea or not.

My friend came over with her son over the holidays.  Her son is only a few months older than Evan.  They are buddies.  We shared pregnancy adventures, new mom doubts, laughs, and tears.  She is one of my dearest friends. While our boys were infants, her son would achieve milestones months and months before Evan.

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Buddies for life

It made sense at the time because he is ten weeks older.  I never worried or focused on it. I remember thinking, Evan would get there in his own time.  After receiving E’s diagnosis, the gaps became wider. Well…actually they always were wide, I just accepted that they would not close in like I had thought they would.  Her son is extremely verbal, always chatting,using multi-syllabic words, complex sentences. He tries to talk to Evan and Evan bounces happily in front of him, gazing at his buddy with awe and love.  He often will try to say something, but it comes out more like a babble because he is so excited.  I love having them together, since they have known each other since they were in our bellies.

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I remember this day very clearly. Evan wanted to drink the water the whole time. 🙂

But I would be lying if I said it doesn’t put me right back to the baby pool-big sea situation sometimes.  I watch Evan do his own thing, happily splashing away, unaware of any development gap or difference.  Repeating a string of sayings over and over again. “Here we go!” “All aboard!”  “Light on?” I love hearing our little guy talk.  It’s just a little different when you have an example of age appropriate speech right in front of you.  My friend’s son uses interjections, adjectives, a rich vocabulary.  I could listen to him talk for hours.  I videotaped him counting a long time ago when I was babysitting him because I found it amazing to hear him count. Evan is using two word combinations, and he only really adds on the word please to make the second word.  And who cares, right?  Certainly not Evan.

E happily splashes in his baby pool.  His smile does not fade when another child expresses his or her need more clearly than him.  He does not notice that he is wearing orthotics and still using a wider gait and walking on his tip toes.  He does not mind that the children at school are sitting in their chairs without any straps and buckles and he is strapped into a booster seat to sit at the table.  He does not catch the second glance the mom in line gives him and me when I say he is 2.5 and he is shouting vowel sounds in the line at Target.

Evan loves the baby pool. He loves when others allow him to enjoy the baby pool.  He also loves when you jump in with him. Play with him on his level, see the water through his eyes.  When he is allowed to push buttons for a little while. Allowed to shout church hymns at the top of his lungs in the grocery store. (only his mama knows they are actual songs) Allowed to turn on and off the light switch a few times every time you enter the room. Allowed to chase the stroller so he can spin the wheels for a little while.

When I was a little girl, I could spend hours in the baby pool by myself. Splashing around, using my imagination to pretend I was floating in the ocean, that I was a mermaid waiting to be rescued.  It’s not a bad place to spend some time.  If Evan doesn’t mind it, there is no reason why I should be concerned.  Doesn’t mean he won’t still receive swimming lessons or that he will not be asked to try out the deep end at some point.  But for now, the baby pool is just right for him.

Splash. Smile. Release.

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My Gift This Year

9 Month birthday

9 months

Scrolling back through pictures of Evan in his first year, my heart hurts a little. It hurts for a number of reasons.  It hurts because I can see the features that indicated he had Williams Syndrome. The blue sparkly eyes, the wide and flat nasal bridge. The memory of his floppy limbs.  At the time I had no idea. Evan was over a year before we received his diagnosis.

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4 months

I’m sure some of you are thinking, “what does it matter now?”  Truly, it doesn’t. And 92% of time, (I did extensive research to get that percentage) I do not look at the words Williams Syndrome and feel anything negative. In fact, most of the time I see it as a true gift. That my son has this rare condition that causes him to have extreme empathy and compassion. It causes him to smile all day long. It causes him to sing at the top of his long and care very little who hears it. I can drop him off at preschool and there is no crying. He toddles away from me happily and forgets I’m there.

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It hurts because I see my father’s rosy cheeks and ear to ear grin in Evan’s chubby baby face.

It hurts because I can remember the difficult time I had post-partum and how I longed to see the beauty in motherhood.

It hurts because I know my little boy is growing up. I know he will enter the public school system soon. That our first meeting with the child study team in our school district is just days away.

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Halloween 2012 17 months

It hurts as I recall the first time Evan was evaluated by the early intervention team. How my stomach lurched each time they asked Evan to complete a task and he would just look at them expectantly, hoping they would play with him but not completing the expected task. Not knowing that he was being tested.

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Please Touch Museum March 2013

Then the hurt turns to a knot in my stomach. A knot of joy intertwined with struggle, intertwined with pride, intertwined with wonder.

My, how far Evan has come.  From this little floppy baby who could stare at a spinning wheel for a half hour straight. From this bouncing bean who loved to leap in his jumper exersaucer. From this eager boy who wanted to communicate with us so badly but could barely get out the word “more” for the longest time.

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Our little Jerry Lee 11 months

This past weekend, I woke up late (glorious glorious thing that was) at my in laws house to find everyone else up and playing in their living room.  Evan saw me, stopped the game he was playing, smiled a huge smile, came over and sat in my lap. He gazed up at me and just very confidently said, “Mama.” First time ever. Not the first time he said “Mama,” but the first time he spontaneously did so, without anyone pointing at me or prompting him. I can remember months and months ago saying to a friend, “I just can’t wait until he greets me and says my name in excitement.” It happened!!

The following night from his crib he whispered, “Ahhh you,” “Fo-eb-a”which translates to “I love you, forever.”

All on his own.

My Christmas gift has already been unwrapped.  And it’s a gift i can unwrap every day.  So blessed.

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A point and a "m-ay"


This is the face of a happy little boy.  He is happy because he is getting to watch Baby Babble 2 for the second time today.  This is not a typical occurrence. Evan watches one or two things a day, normally part of a Sesame Street and either one of the two Baby Babble dvds. But this was a a second watching in the span of about two hours.

Why, you ask?

Evan pointed today.  He used his index finger to indicate his needs. He did it twice.  Once to show he wanted more of a snack, and once to indicate he wanted me to play the Baby Babble dvd.  Pointing is something that comes naturally for children without disabilities. In fact, it typically comes before talking.  With Williams Syndrome it is quite the opposite.  We model for him all the time but I haven’t expected a point from him for quite some time. In fact, Dr. Mervis  indicated that he might never be a pointer.

So today, when he cruised all around the entertainment center, dropping books onto the floor, and repeatedly saying, “m-ay, m-ay,” I knew he was trying to tell me something. He then walked a few independent steps over to me and said it again and again. I walked over to the TV area to see if I could figure out what toy he wanted. He leaned and reached his arm out to the TV and clearly extended his index finger and said it over and over. Then I knew. I have been saying “play” when I turn on a dvd for him and that is what he was saying and what he was showing me. Warmth spread throughout my whole body and I had to sit down with him because the tears came right away.  
And of course, even though he clearly did not need another viewing of this stellar programming, I turned it on for him and took some pictures of his contented little face. 

Moments like this are what it is all about. A point, and a “m-ay”

Ahhh, just what I wanted, Mom.

Grateful

Feeling especially grateful tonight. In light of recent events in the news, and also in my personal life, I just feel so blessed and grateful for a multitude of things. I figured it would be good to write it down, ala gratitude journal style so I can look back when I need to remember what is important in my life.

There is no order to these whatsoever, and there is plenty more too, but I don’t want to make a 20 min blog entry. 🙂

-I am grateful that when I look at the statistics on what entries people are reading on my blog, I see several hits on the “What is Williams Syndrome” link, and “My Bug’s Story.” I am so proud to be spreading awareness.

– I am grateful for my house. For the beautiful flowers my husband bought and planted. For the separate bathrooms that he and I have. For the swing hanging in the backyard. For the tree planted in my father’s memory.

Pop Pop’s Tree

-I am thankful that I found a container of clothes labeled “clothes I want to fit into again” and almost every item DOES fit me again. I couldn’t believe it. Last time I went through that container I could barely button any of it.

-I am thankful for my job experience. It helps me have a totally different perspective on my son and his educational future. This can sometimes be hard, but overall it helps me to have a good idea of possible outcomes.

-I am thankful for coffee. When it is hot, or more likely, luke warm.

-I am thankful for my in laws who watched Evan overnight this weekend so Todd and I could have a much needed date day. I really can’t express enough how amazing they are. Such big hearts.

Grammy and Evan

Pirates Game

-I am grateful to be singing again on a regular basis. It really is such a big part of me, and I have missed it.

-I am so thankful for all the little accomplishments that Evan has had in the past week or so. He crawled across two rooms carrying a Grover puppet, and then handed it to me and took my hand and put it on top of Grover. He wanted me to use him as a puppet. This was HUGE in the communication department for Evan. He also is starting to drop things and say “uh oh” on his own, as well as saying “more,” “waffle,” “soup,” etc with some clarity.

Are you bragging about me again, mama?

-I am grateful for my WS mama community that has become such a huge part of my life. I met with another incredible mom and her family this past weekend.  When I say I don’t know what I would have done this past year without them, I truly mean it. They have been my diary, my venting board, my shoulder to cry on, the voice of wisdom and experience.

Heather, her son Reed (future buddy for E), and me

-I am grateful my mother and stepfather moved much closer to us. It is so comforting to know my own mama is now a short drive away.

My mom, stepdad and Evan December 2011 (can you believe how chubby and different he looks?)

Alleluia

I have been singing as a part of the worship band at church and because I am not an expert musician, I practice a lot at home singing the harmonies. Evan has been picking up on a lot of what I have been singing without me even realizing it. Todd taught Evan to “kiss” during a song too, and I was trying to get him to do it on camera, but if you listen closely, I didn’t get the kiss- but I did hear him say “kiss from me to you” all as one word. That is what I am going to believe anyway…. 😉

Alleluia means to praise God, and in some translations it represents joy.

 Well. this video is my definition of joy- my son singing along with me.

Warm Butterflies

So I had meant to do monthly updates or at least monthly favorites posts.. Ahem…I have not managed to do either on a regular basis. But at least I am blogging more often?

Little over 22 months

 Today was one of those days where Evan kept doing awesome things, and I wished I could have captured the moments somehow, so I could relive them over and over.
We had a really nice play-date with my friends Jen, Barb and her two girls. It was about 4 hours long, and Evan did great roaming around her house, pushing every toy he could find that had wheels and imitating all the words and sounds the girls were making.  The best moment was when he was going through a case of different characters- Pluto, Goofy, Nemo, etc. He picked up a stuffed elephant and you could see the recognition on his face. He looked over at “Elly,” the elephant he sleeps with and looked back and forth a the small elephant and his beloved Elly. He babbled to himself and I just know he realized they were both the same animal. He also put Elly onto one of the toys with wheels and pushed it around a bit. That is huge for him. He much prefers to keep his cars, trains, trucks, etc empty when playing with them but occasionally he will allow me to put some farm animals in them. This time he initiated it!
The really exciting stuff happened when we got home. No Nap Nelson decided he was raring to go and didn’t want anything to do with a nap so I got him up and tried out some of the “homework” the speech therapist gave us. While I was blowing bubbles with him, I noticed he was standing in front of me and was balancing himself only by holding the bubble container, and even then he was barely holding it. I maneuvered my hands so he didn’t realize that I had let go and he was holding the

bubbles himself. It was then that it became clear that he was focusing on trying to open and close the bubbles.  We spent about 15 minutes or so on this bubble activity and he accomplished so many great things in that little amount of time. He used excellent fine motor control by positioning the lid in his fingers so he could place it on the top of the bubbles. He was able to grade his movements and he was using both hands at the same time to manipulate the bottle. The BIG thing though, was that several times he was standing completely independently while working with the bottle.  I attempted to get this on camera and of course, as luck would have it, I couldn’t manage to get a good picture of his accomplishment,. I kept finding myself getting frustrated at not getting the right shot, and then it hit me how ridiculous it was to get frustrated about that when my son was standing by himself. (I needed a nap myself)

The best picture I could manage, and he was on his way back down

I was so excited. His little legs were so wobbly and tired after we worked on this for a while. Working on the stamina, Miss Erin! (his PT)
The other really cool moment was right before he went to bed. I was relaying therapy updates to Todd, going through each therapy session and sharing what we should be working on and activity suggestions. Evan was crawling around the living room looking at books, and playing with puzzles.  I noticed that E was getting really excited about something in a book. He kept making the “eee” sound and looking around expectantly. Next thing you know, he crawled over to me (I was across the room), grabbed my finger, and pulled me across the carpet to where he was playing. I kept looking at him with questioning eyes and saying What, Evan? What? so that he would try to communicate with me. He put my finger on the picture of the peacock. He just wanted me to engage with him and say “peacock” for him!  The major thing is that he went across the room to get my attention and brought me over to where his interest was. He has never done that before. I felt warm butterflies in my stomach.
I’m just so proud of him.

Stinky Face

Wrapped up in his weighted blanket and our reversible Steelers/Eagles blanket, Evan lay against me and listened to me read to him. He has been fighting a really rough cold/virus since Thursday morning so we are on Day 4 of this whopper of an illness. The poor thing is so weak because he can only really keep down liquids and his body is working so hard to fight off the germs that are taking over his little system. Towels surround us because he sometimes vomits from the combination of congestion and reflux.

“But Mama, but mama, what if I were a swamp creature with slimy, smelly seaweed hanging from my body?”
Then I would live by the swamp and take care of you always, I’d tell you, I love you my slimy swamp monster.”

Evan weakly tries to flip pages for a few seconds and then gives up and just listens to me read. Lately he has been doing little “mmm” noises in response to repetitive text and when singing songs that repeat as well. Sometimes he makes a sound that is like the letter or word but rarely is it clear or accurate.

“But, Mama, but Mama, what if I were a super smelly skunk and I smelled so bad that my name was stinky face??”
Then I’d plunk you in a bubble bath! But if you still smelled stinky, I wouldn’t mind.

I’d whisper in your ear, I love you Stinky Face.
I then heard a little voice say, “Ma-ma…” and it was coming from the ball of blankets and towels in my lap.
“Ma-ma….” he repeats.
“Mama?” I whisper but it is more like a gasp.
Evan looks up at me, and over enunciates like he felt I didn’t hear him correctly,
“Ma…..Ma”
My eyes stung immediately with hot tears and I squeezed him and we went back and forth saying mama to each other for a few minutes and Todd joined in from the recliner.
I realized in that moment that Evan had been listening to me for months while I read him the same story. The one with the alligator with big teeth that he likes to touch and kiss. The one where we repeat the word mama over and over every few pages. The times prior to this moment when he  crawled to me saying mamamamamamamaamama and crying, it was sound play, his way of telling me he needed help.But this was the word “Mama.” And I know one day he will see me walk in the room and he will address me with it. Or he will reach up from his high chair and say it.

In an amazing way, chromosomes both matter immensely and mean nothing in moments like this. Because of Evan’s WS diagnosis, he receives speech therapy and we work on babbling and language development all the time. So this big step of saying “mama” feels like a victory in our house.
At the same time, in that moment, when the tears stung and my heart swelled, not one deletion, syndrome, or special need was present in my mind.
Just pure love.(book quoted is “I Love you, Stinky Face” by Lisa McCourt)

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