Archive of ‘speech’ category

It’s going to be okay.

A little while back I posted this blog: Children Will Listen.

I needed to revisit this entry after an incredible moment happened this weekend. 

Todd and I got into a spat and we both needed time apart to cool off and regroup.  I cozied up in bed with Evan and he played a game on his iPad. Todd came in to join us and he lay on the other side of Evan.  We started discussing our argument and sorting things out.  We weren’t using loud voices or using foul language.  But we certainly weren’t in great spirits. 

A few times Evan looked up at us and repeated, “How are you feeling today, Mommy?” or “How are you feeling today, Daddy?” This is not uncommon, however. He is in a phase now where that is one of his favorite go-to questions to ask everyone.  We would answer quickly, “I’m okay, buddy,” and continue our conversation. 

This is when the magic happened.

Evan broke away from his iPad and pulled Todd’s hand across the bed. He then pulled my hand toward Todd and put our them together with the intent of making us hold hands.  Of course we did, and my breath caught in my throat and I felt my eyes get hot with tears. 

He started to do a slight bounce- which he does when he is nervous or excited.  Todd asked, “Is that better buddy?” To which Evan answered, “Yes.” (recently he has taken up answering “yes,” in this very formal way and I love it)

We have known for a very long time that Evan hears and understands far more than what he expresses out loud.  I can remember his first speech therapist saying to me, “He is taking everything in. He is thinking and connecting and remembering, he is just not always expressing it to you.” But even when you know that, you can very easily take it for granted that he is picking up everything you are saying.  We, as humans, rely so much on spoken words for approval, reassurance, connection, trust, the list goes on.  And even with a child with eyes as deep and full of emotion as Evan’s- it can still be hard to know what he is thinking. 

those eyes.


But in that moment it was clear.

He could feel the tension between the two of us.  He knew whatever we were discussing was a not a happy moment.  He wanted to connect the two of us so we would stop our serious discussion and show him that we were still okay.

Isn’t that what we all seek?  To know that we are still okay? In our relationship with our spouse, in our friendships, our jobs- we just want to know that everything is okay

Of course this is not always possible.  We have to help teach our children and students that it is okay for things to not be okay all the time  It’s okay for things to stink and for disappointments to happen and for life to throw you curveballs.  The Hard is going to happen.  How we handle it is up to us. 

But in that moment- when Evan pulled our hands together- it really was okay. And I think I needed to know that as much as he did.  He didn’t need to use oral language to communicate his need.  We knew because he showed us. 

He is constantly showing us.

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.





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.


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…..


I’m going to try harder, buddy.

To speak more carefully.

To listen to what is not said.

To let you glisten.

To trust.


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.


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



Just a Mom


Some days, that is all I want to be.

Just a Mom.

Just another mom of a toddler,  changing diapers, making nuggets, pushing swings, reading books, snuggling, singing, navigating tantrums, giggling, and collapsing into bed.

Sometimes I can do just that. (well that and go to work….but that is for another post)

Unfortunately, the majority of the time, that is not the path paved for me.

Lately I find myself being his case manager. His occupational therapist. His speech therapist.  His medical manager. His nutritionist. Evan’s project manager, that’s me. I just spent the better part of an hour on the phone with our insurance company trying to fix a claim that I have called about 4 other times. Great way to spend my morning off. Sigh…..

I read a post the other day on the Williams Syndrome Support board from a mom who was asking if other parents felt the same way,if it is just easier to wear all the therapist hats ourselves. To stop relying on professionals to direct our way, and instead take things into our own hands because who else will?  I totally hear her plight, and I can see where she is coming from. But it also makes me sad.

Because I just want to be a mom. Plain and simple.

Trying to be "just a mom"

Trying to be “just a mom”

I can remember talking to Evan’s early intervention speech therapist, Miss Becky, (who we miss dearly) after one of his sessions back in the spring. I was asking her numerous questions of how we should be communicating with Evan, to better foster his language. I was probably beating myself up a little for not doing all the “homework” she assigned us from the previous session. She interrupted me and said, “Erin, you have to just be the mom, sometimes. It’s okay. You shouldn’t have to be the the therapist for him, let us do that.”

Wow. That was a little wake up call. Sometimes I feel like all my interactions with my son are calculated. What toy can I choose that will get the most bang for our buck? Will it help his fine motor pincer grasp? Will it foster the need to communicate with me because he will need assistance? Does it provide opportunity for turn taking? Have I put away all the distracting wind up toys and musical things that would pull his attention? Is the dog in the other room so she doesn’t bother us?

And then sometimes I just lie down next to him in the playroom and I pretend to sleep and making funny snoring sounds.

Honestly, that is one of my favorite things to do right now.

Because he crawls over to me, lays his head on my chest and says, “Mommy’s sleeping,” (sounds like Mommy’s sweeping) and then he makes the same funny snoring sound I am. I guess that is calculated on my part too, because I know he will snuggle with me and I do not have to think about anything else but being his mom for those few minutes.


And then I will “wake up” and make sure he is not w sitting, wait for him to initiate communication for another toy and start project managing all over again.

But for those few minutes, I was “just a mom.”

More than enough for me.



A Boy and his Horse

Hi Horsie.

This weekend we took Evan for his hippotherapy evaluation.  Yes, that means exactly what you think, he is going to do therapeutic activities on a hippo. Just kidding…..Or maybe you are thinking he is going to be hypnotized, ala hypnotherapy.  Neither is correct, but don’t feel bad if you aren’t familiar with the term either.
Hippos is the English translation of the word horse in Greek.  Thus, hippotherapy is the use of a horse in occupational, speech, and/physical therapy.  (I did not know the etymology of the word until I started doing this blog entry)

Not sure about this horse stuff, Mama.


Of everything we have tried, this was one therapy that I was super excited for, but I also had no clue how it would go, or how effective it would truly be.  I knew Evan would enjoy being around horses and spending time with adults and young people at the farm. I also have a love of horses and I have ridden horses several times in my life.  But I had a hard time imagining him doing well on a horse, and I wondered how exactly it would help him to progress.  When he wasn’t walking- not all that long ago!, both his physical therapist and Dr. Mervis, the researcher we see in Kentucky, suggested that we look into hippotherapy. Dr. M’s exact words were, “Get him on a horse.”  She felt it would help strengthen his core., which in turn would help with his language development and walking.  I started looking into it last spring. I found a lot of local places that did recreational horse therapy, but not hippotherapy.  Apparently they are similar but it is harder to get insurance coverage with the former because it is not done by a licensed therapist.  I called around, asked questions, looked into our insurance and decided it would make sense to wait until the fall when we were back on my insurance, which has better coverage overall.

 And then as luck would have it, one of my new warrior mama friends (who I practically cyber stalked-a story for another day) suggested this horse farm.  She had taken her daughter here for hippotherapy and raved about it.  She also was very happy with the support the therapist gave her as far as getting insurance to acknowledge the therapy and get most of it covered.  Sounded like a win-win situation to me! So off we went to do a barn tour and then an evaluation was scheduled.
We set off to Brandywine Occupational Therapy and the wonderful Miss Lauren.  My mother went with me, which was very helpful. The occupational therapist asked a lot of questions and it was nice to have a second pair of hands to keep Evan close by while we were having him climb on the playground equipment and walk around.  Her extensive knowledge in the area of occupational therapy is evident and it made me feel very at ease to know Evan was in good, professional, educated hands at this facility.  She used technical terminology and offered reasons for things that Evan does, while also giving praise for different things he has recently started to do.  It’s always heartening to know your child’s therapist really knows her stuff. And Evan’s really do.
At first, I was worried Evan was not going to dig the horse experience.  He started this low whine when they put his helmet on, and he kept looking around like he wanted to anywhere else but at this farm.  Then they had him use a mounting block (bc she thought he could handle it-which thrilled me) and got him up on the horse. He kept doing this low whine and squinting his eyes, like he does when he doesn’t like the food you offer him.  My heart sank, because I really had such high hopes for him. (which translates to high hopes for me- I need to work on that) Luckily, as often happens with Evan, the waiting and anticipation of the activity can sometimes cause him to whine and get impatient. But once they started to move, and the horse began to ebb and flow beneath him, it all changed. After a few short moments he started to say, “Whee!” and “Neighhhhh.” His whole demeanor changed. He held on tightly and kept his back erect the whole time, not waivering at all.  I thought for sure he would try to get off, or lean side to side but I was very wrong.  The therapist started to try different things, like going diagonally across the ring, doing figure eights, and stopping and starting.  When she would stop, she would ask Evan to tell the horse to “walk.”  He just kept saying, “Neighhh!” Then she suggested saying, “Go, Vixie!” (the name of the horse)  After two times modeling for him, he did it independently when she stopped!
I was floored. We are working hard on two word combinations, but I never thought he would do one so quickly, and with a new therapist, on a horse!!! But looking back, that is probably precisely why he did respond so quickly.  No need for bells and whistles when you have horses! (thanks Aimee for that realization)  He probably spent about 15-20 minutes straight on the horse with no signs of fatiguing.  He was especially fond of saying, “Hi! How are you!” to the young lady who was helping on the other side of the horse.  He didn’t tire of looking at he and batting his big blue eyes at her and smiling before shouting, “Neigh!!” all over again.  The natural feeling of riding a horse is so significant for a child like Evan who seeks sensory input all the time. He loves movement, bouncing, being upside down, rocking, etc. And a horse provides all of that in a controlled, organized way.
Sorry for the shakiness, I was trying to keep up with them with my cell phone camera.  If you listen closely at the end, you’ll hear Evan exclaim, “Vixie!”

So the biggest deal of the whole experience was when he had to get off the horse.  She said “Ok, Evan, we’re all done now, we have to get off the horse.” He responded by gripping as hard as he could onto the handles and sticking his bottom lip out as far as he could. She pulled him off, handed him to me and he went in to full blown teary meltdown.  He wanted to get back on her so badly. I can’t really put into words how this hit me emotionally.  I can say I definitely welled up with tears.  Not so much because I was sad for Evan, but more because I was so excited at how much he connected with the horse, and how he truly was sad he had to get off.  Evan has such an easy going temperament. He does not throw a fit when I drop him off at school, in fact, he will walk up to almost anyone, saying “Hi!” and he does not seem to lament the fact that his mommy or daddy are leaving him.  (believe me I know how enviable that is) But that also means he does not display other typical behaviors, like an affinity for things that mean something to him.  So to see him feel true sadness because of how much he LOVED being on that horse, it just filled me up inside.
He kept saying, “Vixie, Vixie,” on the way home and I showed him the video a few times. So now when he sees my phone, he says, “Vixie, vid-ee-oooo”
I can’t wait to take him again.
And to see how she is going to work on self feeding goals on a horse.
Somehow, I trust it will work.

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Finish the Sentence Friday- (a little late)

I’ve recently become a geeked out fan of Kristi over at Finding Ninee. Her writing is beautiful, clever, hysterical, and the emotion behind her prose is very familiar. She reached out to me through a few comments and I became like a giggly schoolgirl all excited to hear from a blog “celebrity.” 
Anyhoo…. I hope to be guest posting on her awesome site at some point, and in the meantime I am doing a “Finish the Sentence Friday,” that she and a few other bloggers host every Friday.  (Yes, I am aware it is almost Sunday, but we’ll just ignore that little fact)

This week’s prompt is:
 The best part of my day is…….

I wasn’t planning to blog today. I am shooting to get one blog entry done a week, if I can manage that, and I already filled that quota.  However, I had a few emotional few days this week and then today was a darn good day. An all around, decent, worth remembering, GOOD day. And those days need to be blogged about. Like that preposition at the end? Good, because there will probably be plenty more, I have a tough time avoiding them. 
Typically, the best part of my day is the last ten minutes or so before I put Evan in his crib for the night. We sit in his nursery almost every night, feed the fish, sing songs, and cuddle. We sit in the dark, whispering, singing, and wrangling. Wrangling is what I do when he wiggles all over the place  trying to get out of my arms. I wrap him up in his doggie weighted blanket and some nights he actually leans on my shoulder and allows me to hug him and really hold him. I can remember when he was teeny tiny and I could do that whenever I wanted to. However, because of many different circumstances- MAJOR sleep deprivation being the main one- I didn’t enjoy it like I wish I could have.
But I sure do now.
And today was a day where I feel like I had moments like that over and over. I started out the day heavy lidded, as I listened to Evan bounce and sing in his crib at 7:15.  I typically would have been thrilled he slept that long but I had a tough night’s sleep so I was pretty out of it.  But then he ate a great breakfast, almost an entire waffle with jelly and cream cheese, and we set out in stroller and on foot to the local park to meet E’s speech therapist for a session at the playground.  On the way, she wrote me to say she was running a little late. So I walked a longer route, and took Evan out of the stroller along the way to let him walk. He toddled all over, through piles of leaves, sidewalk, grass, transitioning from surface to surface with no problem. I was amazed. Each person who passed by jogging or walking a dog was greeted with a very upbeat “Hi!” and a huge toothy smile from Evan. He independently pointed to and identified flowers and a dog. I just couldn’t stop smiling. 
Then on the playground equipment, we had a ball. During the speech session, we worked on two word combinations, waiting for him to say, “Push, Mommy” when on the swing. And then generalizing to, “Push, Becky.” to his therapist. Not only did he do that after only a few examples of modeling- we are pretty sure he tried to say, “Push me, mommy!” Which is MASSIVELY HUGE. I don’t know that he has said three words together on his own, except for book text or songs. One of the most exciting moments was when he went down the twisty slide totally on his own- so much on his own, that I didn’t even know he went down until he was at the bottom, face down because he went down on his belly. A few months ago he wouldn’t have gone down even with assistance.
He did get a mouthful of mulch once, but he bounced right back. I love his resilience.

Becky worked on adjectives in two word combos- “Green leaf, yellow leaf, bumpy slide, etc.”  All the leaves she used were on the ground.  On the way home I stopped a few times and pointed up to trees that were within reach and without receiving an cue- he said “green leaf.” Of course he did that for red leaves too, but it was two words, and he knew they were leaves! I just kept beaming. 
One thing I have been working on with Evan for months and months is getting him to use please and thank you. Becky has said it is not necessary for me to worry about him using them with any type of consistency- that we should focus on other things first. But I still keep trying. I had just mentioned to her that Evan still isn’t saying please. Well, we got home, and I got out a bag of veggie sticks (the ones that are glorified potato chips in stick form with a little veggie dust. I held one out to him and he said, “stick please” (his approximation sounds a little more like “ick, pee.”). I squealed with happiness and he definitely got his ick.
Moment after moment of progress and joy.  
He also ate a dinner that consisted entirely of solid foods. No jars. Fish sticks and tater tots. Gourmet and fancy it was not. But age appropriate it was. Our tough little guy who used to balk at eating anything that wasn’t watery and on a spoon.
My favorite part of today was the whole kit and kaboodle. I was able to take a nap with Todd while Evan napped. Evan ate like a toddler. I finally bought new shampoo this week so I was able to clean my hair today without squeezing the heck out of an practically empty bottle. Evan sang along with me while I sang some showtunes. 
Thursday night I found myself teary eyed while talking to some friends about how I was worried I was “missing it.” Worried I was missing the good moments with Evan, that life was passing by too quickly now that I was back to work. 
Then today happened.
I’m not missing it. 

Not entirely anyway. Today was a good day. Darn good. And that is all that matters right now.

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Yes, Virginia, there IS good in the world.

Bouncing. What E does better than anyone.

I woke up today to a post about a fatal shooting that happened locally to a 53 year old woman who was house sitting.  Last weekend we watched the news reports about the gun man who killed 13 people at random at the Washington Naval Yard. This.  Last December I blogged about the horrific events in Sandy Hook.
These are the events that cause us to cling to our families. To talk around the water cooler about how unsafe we feel, how our hearts are shattered, our fears renewed.  You will often read posts on Facebook saying, “What has this world come to?” “I can’t believe I am raising children in a world like this.” And the scared, angry, questioning posts keep coming.
I am not writing today to say that these events are not scary. Or that there aren’t horrible, evil, ugly people on this planet.  I know there are.  But I also know that there are some amazing people that do so much for so many And lately I have been reminded of that on an almost daily basis.
That trampoline picture at the top would not exist if not for our neighbors. They have showered us with hand me downs from their adorable twin boys who are about a year older than Evan. When I say hand me downs, I should say almost new wardrobe. Clothing from Baby Gap, good quality, barely worn in clothes that Evan can jump, crawl, walk, and roll in. I was just folding all of the pajamas they gave us for the colder months and I think there are over 20 different sets, offering different amounts of warmth. They have given us blocks that have helped Evan to count, and stack. Their boys are so wonderful with Evan. Even though the twins are highly verbal, they do not display frustration with Evan when he tries to communicate with them. One time I heard one say, “I don’t know what you say Evan, but it’s funny!” They giggle together and push around trains. They are lovely, generous people and I am just so grateful they moved in.

Evan at his “work station” before I realized the chair could be flipped so he was higher. Whoops.

 I could do a whole separate post about Early Intervention and how awesome Evan’s therapists are.  They are loving, experienced, thoughtful individuals who have helped Evan to blossom.  A friend of mine from work who also does E.I. has taken a special liking to Evan.  I was definitely friendly with her when I was teaching and she was the occupational therapist at our school. But we weren’t socially close, we did not really talk outside of the school environment. Well now I feel like I could call her ANYTIME and she would be there for me in a heartbeat. She helped us get the blood work we needed for a research study, she got Evan into a music class in a program he was not “officially” a part of, she came over multiple times in the months after E’s diagnosis  to give us tips and things we could start to work on while we waited for early intervention to begin. She got us into the Hanen speech workshop which led to our new speech therapist and HUGE speech gains for Evan. The program she connected us with for music also led to Evan’s preschool prep class and the cube chair that is in the picture above. She shrugs it all off saying it is no big deal but she has helped our family so much, I can’t begin to thank her enough.
It’s no secret, I went into my transition back to work with a lot of trepidation about Evan starting school. I was worried about his eating, his talking, his sensitivity, would he nap? Would he make friends? Would the teachers be overwhelmed by his needs? Would they find Evan to be too far behind developmentally? I preach honesty on this blog and I can honestly say………..Evan’s new school and his teachers are incredible. Simply amazing.  They care so much about their students. I knew they were nice ladies. I knew the ratio was small and lovely. I knew they were willing to have Evan as their only child with special needs, even with his age being slightly under their minimum. All reasons that helped us to choose the school. What I did not expect was how truly interested they are in Evan and his success.  They ask questions, give feedback, and run things by me before trying new things.  I noticed a fun toy on the floor that I recognized from Baby Babble and I commented on it. The director of the school said she bought it over the weekend after thinking of Evan and how he might like it-it was in his age range, that the cars were not too small for him. E is struggling to nap there (transition from cozy dark room at home in crib to a dimly lit room on a mat where he can just roll right off and walk around) and they constantly say, “we will try anything, just tell us.” The biggest heart melter was when I received a text from the director after I had sent information to them about an upcoming WS conference locally. She said she was very interested and wants to attend! The director of my son’s daycare/preschool wants to attend a Williams Syndrome conference! After he has been in attendance for two weeks. Evan’s occupational therapist wants to attend too!!! So thrilled.

Off I go, Mom, I got this!

Just a few more examples of goodness that has sprinkled around in my life in the past few weeks.
-Without asking, my mom has emptied the dishwasher for me and kept my sink empty the days she watches Evan.
-My dreamy husband is brewing a Chocolate peanut butter stout because of how much I love pb. (don’t hate, I tasted it today, yum!)
-The  morning I dropped E off for the first time,I walked into my classroom and found a vase filled with fresh flowers from the woman I co-teach with.
-Unsolicited, a co-worker I am not particularly close with shared her peaches with me at lunch after I lamented missing out on the last cup.
-A friend is working on a new blog design for me, and sharing her expertise for nothing. She said she enjoys what I write and she enjoys designing so it is her pleasure. 
I realize that shared peaches, or friends who send supportive text messages when you need them most, are not going to end all of the unnecessary violence, hatred, and prejudice in the world.  I figure I can’t control the evil that exists, and that can be unnerving….. but I can control how I focus my energy.  And I am choosing right now to focus my energy on love, the love that surrounds me and the love I feel compelled to put out there. Evan exudes love, and I see no reason not to try to reflect that myself.
Put it out there people.
Put love, kindness, patience out there.
See if it sticks.
I know it has in my life.

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Listen well.

This morning I was telling Evan’s speech therapist about how it can be hard when other people are talking to Evan, and trying to elicit a response out of him. I’ll sit quietly while a very well meaning friend or family member says, “Evan, what are you looking at? What animal is your favorite? Do you see the bear?” Each question comes out in a burst, followed quickly by another question when he doesn’t respond.  Evan tries to fit in words and sounds, but because no time is given in between questions, it ends up sounding like:

Or he might regale you with some excellent raspberries.

Adult: “Evan, what are you looking at?”
Evan:  “Abbbb”
Adult:  “Is that your favorite animal?”
Evan:    “Oooooo”
Adult:     “Where is the bear?”
Evan:      “Eeeeeee”

And then I end up making some excuse for why it is hard to understand him that particular day.  “He really IS talking better these days, he is just a little overstimulated.” Or, “He has trouble with inital consonants, he is better with vowels.”

The truth is, Evan is communicating well. He is not just getting across his basic needs anymore.  He is telling me what book he wants to read, who he sees on the television screen, what color the fish are in a book. He sees a box with Cookie Monster on it in the store and he exclaims, “Ook-ee!” over and over because he knows it is his favorite blue monster.  
But even I, (the person who spends the most time with him), will become frustrated because I do not know what he is saying, or I will ask him over and over to identify something and he just won’t do it.  
What I need to do is LISTEN.
What WE need to do is listen.  
Better yet….

not just listen, but listen WELL.

As my Evan’s speech therapist walked out the door, she gave Evan a kiss on the cheek and she said, “I’m so proud of you buddy, people just need to be good listeners!” 

All day long I have been repeating that line to myself, “people just need to be good listeners.” It has morphed into, “We need to listen, and we need to do it well.”
Evan teaches me things daily, if not hourly.  One of his most poignant lessons has been to listen well. I like to think I am a good listener. I always tell my friends I am there for them when they need to talk. I check in on my husband often, to make sure he is doing well and I encourage him to open up to me.  But I know that I do not always listen. Really listen.  Sometimes I do. But sometimes I go through the motions. Shaking my head when I am supposed to, and waiting until the opportunity strikes for me to chime in with something applicable to my life.  It is more “hearing” than listening.  

Evan listens. He listens intently. He watches your lips, the way your tongue curls when you say “lion.” He focuses on your eyes when you narrow them in disappointment. He tries to respond in the way he thinks he is supposed to, either with the same sound or with the answer to your question. If he cannot see your mouth, he might turn your chin towards him as to hear and see you better.   

In all areas of my life,  I could listen better.  To Evan, to Todd, to my family members, to my own heart and gut.  I could have a more discerning ear to the thoughts I have that are just noise, the ones that cause doubt, comparison, shame, or guilt.  I spend far too much time listening to those things than I do to the people in my life that matter. Cutting down my time on Facebook and being less connected to my phone has helped with that.  Staying more present helps with listening well. 

 Take a moment today, tomorrow, this week – and quiet your thoughts while someone is speaking to you.  Think about what it is he or she is conveying to you and how important it is to them that you truly do listen.  Even if it is your child asking for a goldfish cracker for the tenth time, or your spouse asking why you didn’t take the trash to the curb.  Try not to react right away, just listen. 

The product of good listening.

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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.

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