Archive of ‘development’ category

Dear Mama

Colorado August 2010

Colorado August 2010

Dear Erin,

I wish I could give you a big hug.  Tell you that you are going to make it through the summer okay.  The unbearably heavy sadness will begin to lift and change into a more permanent hole in your heart.  It doesn’t sound great, but it is much better than the pain you are in now.  4 years later and I still think about him almost every day.  But it is not the first thing I think of when I wake up in the morning anymore.  When I dream about my dad now, I wake up happy that I had a chance to see him.  It is not going to make any more sense than it does now.  I wish it did.  But you will find ways to remember him.  Ways to honor him in your every day life.  You don’t realize it, but next month you are going to discover you are pregnant.  It will blow you away considering your pregnancy loss just two short months ago.  You are going to get a chance to see glimpses of your father every day, through the eyes of your son, Evan.


Dear soon to be mama,

Tomorrow your life will change in ways I cannot make you understand right now.  You will pace around the house tonight eating waffles and stopping every now and again to wince from what you “think” are the real deal contractions.  Hold on sister, because they are just the previews.  I want to tell you to breathe. Breathe in the peace, the silence, the feeling of being one with your son before he is born.  Before he is out in the world and you have to care for him in such a different way.  Know that things are going to change and they are going to be hard. Really hard.  But I can tell you with certainty, it will not last forever.  It is okay if you don’t make it without medication during the birth. It is okay if you struggle with nursing.  As a good friend of ours says all the time, “no one gives out medals if you do those things.”  GIVE YOURSELF GRACE.

One day old Evan in the NICU

One day old Evan in the NICU

Dear Mama of a newborn in the NICU,

It’s going to be okay.  He is fine in there, he is cared for so well by those dedicated nurses.  I know you want him back in your room with you so badly because he is your little guy, you can’t believe how quickly he was swept away.  But in a few days you will be home with him and you will be wondering why you didn’t sleep a little more while he was in the NICU in such good hands.  His levels will increase, and you will take him home.  Breathe.

Evan- a few days old June 2011

Evan- a few days old June 2011

Dear very new mama with newborn at home,

This is the hardest letter to write.  I look at this picture and I know the turmoil you are feeling. I know the insanely strong love you are feeling for that little man but also the intense feelings of responsibility, fear, worry, and guilt that are swirling around in your very sleep deprived head.  I know you feel like you are physically attached to your child, and it is hard to get a chance to shower, sleep, eat, without needing to nurse, pump, or prepare for the next nursing session.  And oh the guilt…..oh the horrible, purposeless, painful guilt you feel every time you wish for a moment by yourself. And then by the grace of god, you get one of those moments and you lie there trying to nap but you can’t because you feel like you should be holding him.  Everyone is telling you how awesome it is to have a newborn and you just want that to be true. Instead you are walking around like a zombie, and worrying that you are not fit to be Evan’s mother.

Okay, so that is where I step in.  You are wrong. You are the best mommy that little guy has, and he needs you.  He needs you to take care of yourself and GIVE YOURSELF GRACE.  No one is going to judge you if you need a nap.  No one is going to judge you when you need to stop nursing because it is too much.  It is hard right now. Capital H. HARD. Not hours and hours of non stop joy. Hard.  Your hormones are plummeting, your hair is falling out, and you are getting up 4-5 times a night to care for your son.  It is okay for it to be hard. Let it be what it is and I can tell you…..he WILL sleep through the night. Not when he is three, like some very mean moms have told you……When is about 13 months he will start to consistently sleep through the night. And before then you will get blocks of 5 hours at a time which will feel like absolute heaven.  And all those doubts, those fears, those ugly nasty statements of guilt and shame you keep rolling around your head?  They will soon lift as well.  You will realize, you are doing okay.  He is in one piece. You can take showers and he will sit in the bouncy seat and be just fine.  You can make breakfast while he plays on the carpet with his toys.  The HARD will soon become your normal and you will not even realize when the change happens.


Evan a few weeks shy of one year old May 2012

Dear Mama of an almost one year old,

This month is going to end on a very tough note for you.  You have no idea what the doctors are going to tell you about your beautiful baby boy who lights up your every day.  You have been cleaning up after hours and hours of repeated vomiting. You flinch when he coughs or gags because you know what follows.  You have been trying different foods and trying some of the same foods Evan used to eat and he won’t have any of it.  You worry because his weight has plateaued and the doctors just can’t seem to figure it out.  You are going to go through his birthday weekend telling yourself that he does not have any genetic condition. That he just has a gastrointestinal issue and medicine or surgery will fix it one day.  Mama, I say this gently, but you are wrong, and as I have said before- it is all going to be okay.  Evan’s diagnosis will not  change one bit about your relationship with him.  If anything, mama you are going to become one dedicated advocate for your son.  And Evan is going to start Early Intervention services, which will be scary, strange, and hard for you at first, but soon it will become a welcome support that you look forward to each week.  Evan is going to flourish with his therapists.  He will be eating some solids by the end of the summer. You would never believe it, but today, at almost three years old, Evan ate chicken nuggets, fries, and apple sauce for dinner. Toddler gourmet for sure, but I know how impossible that seems to you now.  But he will.  Keep at it mama, he needs you to be strong for him. That doesn’t mean you can’t cry or mourn the loss of the child and future that you had all planned in your head.  Tears do not negate strength.  They are a sign that you are being honest with yourself.  But please know, that as you learn more about Williams Syndrome , the easier it will all become.  Evan is going to do some amazing things. Just wait until you hear him say “I love you,” for the first time, ride a horse, and walk across the playground.  It’s all worth it.  He’s even going to go to school in the next few years. I know, don’t throw up.  You are going to survive it. It is going to be so wonderful for him. And for you and Todd.

This is going to happen a few years from now.

March 2014

March 2014

I’m telling you. It’s going to be okay.  xoxoxo

Baby Pool

2012-11-28 07.58.56

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.


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.

2012-08-15 07.52.00

2012-08-15 09.45.25

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.

2012-07-25 11.29.30

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.

Knoebels 2011 049

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.


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.


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.


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.


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.

Putman_Family (10)


W is for walking- w-w-walking….T is for toddler. T-t….typical…?

If you would like to sing along with this entry’s title, please watch this. I probably sing a version of that song about 20 times a day. No, I am not exaggerating.  Music is the cure for everything when it comes to Evan.

So since posting the walking video at the park last week– we took a vacation to Vermont and are now home safe.  I expected that Evan would be toddling all over Stowe. Alas, he continued to prefer crawling and even with prompting, did not do much independent walking.

Then this happened on Monday:

Our awesome physical therapist takes us to the Children’s Discovery Museum in Cherry Hill occasionally and she works with Evan using the exhibits and equipment.  Clearly, it is highly motivating for him as you can see in the video.  Since Monday when he took off walking all over the museum, he has been attempting it more and more. He needs a reminder now and then to stand up, because I think he is just so used to immediately dropping down to crawl that he forgets.  It is so exciting to see him taking risk after risk and trying so hard to stay upright as long as he can. 

Then today rolls around and he eats almost two whole pieces of french toast, I started having him use a step stool to wash his hands, and he helped me “clean up” some of his toys.  Big boy!  He also has begun testing limits big time.  He has known the meaning of the word “no” for quite some time. He doesn’t always listen to it, but he does take a moment to process it and it gives me a second to intervene. Today he started to do things he knows he is not supposed to, for example, pulling my earring out, or grabbing remote controls.  He starts to do the forbidden activity and then looks over at me and says “ohh? ohhh?” Basically prompting me to say no.  So I do, and then he tries again.
Tonight this happened approximately five times in a row.
After he skipped his nap.
Suffice it to say, I was pretty frustrated. I tried to be “Super Nanny” and repeatedly remove him from the situation, and be as calm as I could be.  It took a lot of deep breaths.

It was one of those nights where I was counting down the moments until E’s bedtime so I could have some time to myself.  Then I started our bedtime routine. I wrapped him like a burrito in his weighted blanket, we fed the fish, and sat down to sing some songs in the nursery rocker. He has been really into “You are my Sunshine,” lately so I started singing that.  He cozied up in my lap, leaned his head against my chest and looked up at me with those sparkly eyes.  It was very apparent that he was content. Content to simply be in my lap, listening to a song he loves.

I know he was displaying typical toddler behavior when he was seeking to hear “no” over and over.

I was actually kind of thrilled.  
That is one of the funny parts of being a mama to a child with special needs.
You rejoice when they throw “typical” tantrums. 
You rejoice when they eat french toast without gagging. Almost two WHOLE pieces of toast!
You rejoice when they move their fingers together at the right times during “Itsy Bitsy Spider.”
But the way I felt holding him in the rocker tonight, that wasn’t unique to special needs mamas.
That was just good old fashioned mama love. 

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.

He’s walking…yes indeed, We’re talking about little E……

Hopefully you sang along to the post title to the tune of this song. When I sing that with him, he gets so excited that he fills in the word me before I even get to it. So adorable and so Evan.

Sooooooooo…..the big news is, Mr. Man took more than just two wobbly steps this week. He walked across the living room during a physical therapy session. AND, the following day in music class he toddled all over the place, walking from person to person. 
He is not a “walker” yet, he still falls or sits down in between little bursts but this is huge for him.  We just got back from seeing Dr. Mervis, the research geneticist down in Kentucky, and she and another highly regarded geneticist Dr. Morris both felt that Evan would benefit from shoe inserts to help his balance and pronation.  So the minute we got home, he measured him and ordered them and they arrived yesterday. So you are probably thinking, wow, that is great, you put the inserts in and they helped him right away! Funny thing is, we hadn’t even tried them yet. I just took him today to get new sneakers bc his old ones were far too small to accommodate the orthotics. Excuse the fuzzy phone picture below, but there he is showing off his new kicks. Now Mommy and Evan can wear New Balance shoes. His are FAR cooler than mine. (and that is not a joke-my sneakers often resemble those of individuals far older than me because of my elderly ankles and feet) The best part is that they fit the orthotics great, and they were cheaper than the Stride Rite pair he was wearing. 
The most amazing part of all of this, is the feedback I received from his little video. I, of course, rushed to the phone after PT was over and called Todd to tell him the good news and I sent him the video. Then I sent it to all the grandparents and close family members. I posted it on the Williams Syndrome Support group and sent it to a bunch of friends. The responses I received were so heartwarming and touching. Lots of “Yays!” and “I’m so proud of him, and of you!” and my favorite, “Happy tears!” I started tearing up several times just reading the responses. It just reminded me of how precious this little guy is. He is so loved and cared for, and that is really all a parent wants for their child, right? That he would be loved and cared for by the people in his life. And Evan has that a million times over.   I’ll keep saying it, thank you so much. We are some lucky folks.

Look mom, new sneaks!

We have a TWO year old.

Family Shot, Evan 2 years old

Two years. Two years that have come and gone in so many ways. Painstakingly slow when we were going on two hours of sleep a night for months, And warp speed fast, when days are spent playing in the sand, watching Evan learn to walk, snuggling before and after nap time, and knowing my days at home with him full time are numbered.  But either way, we made it! We more than made it.  We have a happy, healthy, thriving two year old.
Last year at this time, we were just finding out about Evan’s diagnosis. We were just being hit with the news that would change so many things for us.  We had a huge party for Evan that was on the same day as his baptism. It was a crazy idea, to have over 50 people over our house, just an hour after we returned from church (in Philly).  But we wanted to celebrate two big occasion and we wanted to share in it with loved ones.  Two days before the party we were told that Evan might have Williams Syndrome, but we needed to go to a geneticist to make sure. Todd and I handled that weekend differently, I was convinced he was fine, he did not have the condition, the doctor had made a mistaken assumption.  Todd had done the same research I had, but his logic took over and he knew deep down that our little guy was missing some genes. Either way, we both were overcome with emotions, worry, confusion.  The party is a bit of a blur for me. I do remember that Evan was not himself. He was extremely tired from church that morning, and all the attention. He took a nap, and when he woke up, he was groggy and his reflux was acting up terribly.  He just wasn’t his chipper, social self.  We had not discovered his high calcium yet, so we were continuing to push high calcium foods and drink in him, which was exacerbating the gastrointestinal issues he was having. I remember taking pictures of him with his cake in front of him and he would gag when he looked at it, and when we tried to give him a small piece, he pushed it away and gagged again.  At that time, most gags came right before a vomit, so we didn’t push it.  I didn’t let on, but it was breaking my heart that our little guy couldn’t enjoy his birthday treat. Such a silly thing. When I thought about being a mom, I figured I would have to limit his sugar intake, try to cut down on sweets. And there I was, crying inside about the fact that my son couldn’t eat his birthday cake.

In the months to follow, as we got Evan the care he needed, the early intervention therapies, the appointments, the correct amount of calcium in his diet, etc, he began to handle food better, and keep it down with more ease.  But I never would have imagined what would occur just a year from that party where he gagged over a few crumbs.

Age 2, upon receiving cupcake

About 6-7 minutes after receiving cupcake

I watched him as he picked up the fondant tire off the top of his cupcake, and then try to put it back on the top multiple times. We took the tire away, because I don’t think he realized it was edible. He then began to touch the cupcake with curiosity.  We give him such small pieces of food typically bc the speech therapist is working on age appropriate feeding patterns with him and the bigger the piece, the sloppier he gets. Makes sense.
Well, he was puzzled with this cupcake because it was HUGE. Adult sized. I held my breath a bit, thinking he would squish the icing down, feel the texture and throw up.  Next thing you know, he is shoving it in his mouth and going to town.  Chewing, swallowing, shoving. Repeat.  It wasn’t until it was almost gone, that I realized he was REALLY eating it. He kept it down, he ate dinner later, drank all his milk mixture. No issues. Multiple times I felt my eyes sting with tears. I just felt so proud of him. And so lucky to be his mother. (and not because of a cupcake)
We have a TWO year old. A brave, hard working, sunshine-of-our-days two year old.

 Yes, this is a positive, 
dripping with sugar, 
blog entry. 
Dripping with chocolate cupcake crumbs. 
But I’m okay with that. 
In fact, I’m very okay with that.

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.

Proud Mama

Grilled “Cheese”

Signing “more”

Quick note to share that E is currently chowing down on a grilled “cheese” sandwich.  He has tried this once before over a friend’s house and had trouble with the stringy cheese. Since then we had the geneticist appointment with the dietician input about being even more careful with his calcium.  Enter the world of vegan cheese.  Not gonna lie, it’s not pretty, it smells a bit funny, and grills even funnier. BUT, the bug likes it, and is excitedly signing “more” for it over and over. It only has 2% calcium which is WAY better than regular cheese or the enriched vegan ones I kept finding.

Big Day in our house. Slow and steady wins the race. (Yup, keep reminding me of that, k? K.)

Hanging with Hanen

Visit HERE to see the program I reference in this blog entry 
(Disclaimer-Please read this with the understanding that I did not attend an official Hanen program or become Hanen-certified. This was just a small workshop to focus on the basics for parents of children in the Early Intervention program)
Many of you are probably thinking, well duh. He has been for a while, Erin.  Ok, so yes, I have been really excited about the times he has repeated “whee” and “mama” and how he has started to consistently complete parts of songs when we sing to him.   He has started to take turns when we play and will take our hand to “show” us when he needs help.  Until last night, I wasn’t really allowing myself to celebrate all the great ways that Evan communicates non-verbally.  I have been so hung up on helping him to use language spontaneously and use signs when he cannot tell us what he wants. 
But he HAS been communicating, just not in the way I thought he should be. 
Oh shoulda coulda woulda, right? Silliness. He already is!
My friend Karen signed Todd and me up for a Highlights of Hanen workshop through the Early Intervention program in our county. It is two nights, and free! Last night the speaker said we might even extend it to another night because there is so much valuable information to share. She likes for parents to be able to go away and process what they have learned and then come back after trying it out at home.  I borrowed the book by Hanen, “It Takes Two to Talk” from a WS Mama. I have read through most of it, and I had been doing a few of the things I had learned in the book but had not seen much progress with Evan. I am not sure if it was because I was not using it correctly or if Evan just wasn’t ready yet.  I knew the basic philosophy behind the program- that in order to help develop your child’s speech and language skills, you need to sloooooooooow down and really pay attention to your child. I had started to give more wait time and babble back to Evan using the sounds he was using. 
But I wasn’t really really paying attention to Evan’s attempts to communicate with me. I thought I was, but I know now that I can do a much better job.
In the first ten minutes of the in-service, I already felt myself beaming inside, while I thought of all the ways that Evan does communicate with us on a daily basis. Through eye contact, reaching, hand over hand showing us what he needs or wants, and using approximations of words, like “Ahh” for Dada and ooooo for go.  She talked of how it is possible for a child to be still developing their motor planning skills that are necessary for speech. And if that is the case, a child just might not be ready to say a word, even though you think he understands it and should be able to. I realized I have been waiting and waiting for Evan to clearly say Hi, but he has been, he just doesn’t say it in the clear way that I was waiting to hear. And in the meantime, he is using something like, “Ha!” which is just fine! It is more important to move in the direction of talking, I can’t pull a word out of him.
Here are some of the basics we learned (as interpreted by me):
  • Learn all the ways your child communicates with you already, nonverbal and verbally. Make sure to celebrate those ways.
  • Create opportunities for your child to communicate with you. Examples: put a loved toy out of reach, hide the cookie, give him or her an empty cup when he/she is expecting a full cup of milk.
  • Give choices
  • Repeat, repeat, repeat. Try to say a word 5 times before moving on if your child has not said it him or herself. “Wow, that is a funny duck. Did you see the duck? The duck quacks. Yellow duck! Squeeze Duck.”
  • Let your child lead: Observe their behavior, what are they looking at? Do they want something? 
  • Wait expectantly with wide eyes, leaning forward, showing interest. Count to ten internally. It is a loooong time, but children process at much different rates than we do. You might see the wheels turning during that wait time, and it is pretty great when you do. 
  •  Say less. This was big for me. If you haven’t noticed, I am a bit long winded. But children, especially littles- can only take in so much. You do not need to embellish. Your child drops their cup- “Uh oh! Cup on floor. Mama pick up cup.” 
  • Take breaks in between phrases and watch your child. Is he engaged? He might try to pipe in with something, do not interrupt him, let him speak!
  • Stress the important words. If you want your child to learn the word “big,” make sure to say it louder and longer than the other words being spoken. “Wow, that is a BIG ball. It is so BIG!
  • Speak using words that you want your child to use. Speak in the first person. If your child is crying, say, “I’m sad,” or “I’m drinking milk!” (this was a tough one for me to grasp but the speakers both said that children up until about age 3 or 4 hear our words as the ones that THEY want to say.)
  • Slooooooooow Doooooooown. Remember your child is hearing a lot of these words for the first time, and language is  still very new. They need time to process before they can begin to try to communicate in return.
Next week they are going to focus on book reading. One thing I started doing, which was much different from what I had done as a teacher, babysitter, and daycare provider; was to have Evan face me when we read a book. This way the reading experience is shared. He can see my facial expressions, and watch my mouth to learn positions for sounds. This way you can see what your child is interested in looking at as well. I didn’t realize how some pictures made him smile or cock his head to the side with interest. Those are opportunities to engage with him and see if he will communicate with me about the pages he likes. I still have him face out from me sometimes, because that is good snuggle time for us, and if he really likes the book read to him, he will lean against me and get really comfortable. I won’t give that up completely. 🙂 
So why was this morning so particularly amazing to me? Here are some highlights.
 I got him out of the crib, picked him up and he leaned on my shoulder, which he does most mornings. I said, “Awww, hug…..hug……I like hugs.” Then he looked at me and I said, “give mommy a hug?” and he did it again. This was not totally out of the ordinary but then when we got downstairs and sat on the couch together, he sat facing me and I said it again, and he leaned his head right against my chest. He has never done that before! I kissed him and he put his hand out and I kept saying kiss, and he would put his hand back up for another one. Then I tried the “give hug” again and he leaned his head against me again! So it wasn’t a fluke! I noticed he was staring up at the window where the light was coming in. So I watched him quietly for a bit. I said, “light?” And he got excited and looked at me and grunted. I pointed at the window and said, “light?” and he grunted with excitement again. Then (this is the exciting part) he took my hand, held it up to make me point again towards the window. I realized then, he wasn’t looking at the window. He was looking at the light switch on the swag. So I pointed, and said, “mommy turn light on?” and he started jumping in my lap in excitement. So I turned the light on and he squealed. I couldn’t believe it. I just couldn’t believe it. 
We had a whole conversation.
Without words of course, but I knew what he wanted, and he knew how to show me. 
I need to point more often. I think I have in my mind that children with WS talk first, point second- so I haven’t been pushing it. But it helps Evan to “show” me where he is looking. 
I apologize for the super long post, but I know a lot of my friends on the WS Support Board are looking to learn from the information we gathered at the workshop. 
Um so did I also mention that he will sing a little part of Bruno Mars, “Locked out of Heaven?” He and I danced together and he only held one of my hands. My heart was singing. I have my new friend, Kate Leong of Chasing Rainbows to thank for that. She posted a video of she and her sons dancing to the song and Evan (and I) could not get enough of it. Here is a little clip of E joining in with my Bruno jam.

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