Archive of ‘trust’ category
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
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:
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.
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!”
I didn’t think the zoo would matter to him.
Adults need to listen too.
Children will see….
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.
Bear with me, because I feel like I am going to be a little scattered when writing this. Could be the head cold or could be that this topic has been swirling in my head for a while now.
Evan is almost three. Gulp.
Where has time gone?
When he turns three, he loses early intervention therapies (and beloved therapists) and then becomes a part of the school system in our town. As a part of the transition process, we have several meetings with the child study team where we discuss Evan, schedule new evaluations to be done, look at results, discuss how he has been doing. and make an educational plan. The experience of being a special education teacher with my Learning Disabilities Teacher Consultant certification who now has a child with special needs is a whole different blog entry. Phew, it sure is.
But the one thing that popped up of course is that Evan has Williams Syndrome and the school district professionals had never heard of it, nor had serviced a child with it before. I was thrilled when the school psychologist brought along his intern to our first transition meeting and you could tell she had read up on WS. She asked a lot of informed questions and shared some things she had read. Then a few weeks ago I received an email from the school psychologist saying that they had already done a little presentation on WS for some of the teachers at the school and he hoped to educate most of the staff on WS before Evan starts school.
Great! Wow! They are really proactive, they want to learn and be prepared!
Well, that is how I felt at first and that is how I still “sort of” feel. (and believe me, I am nothing but happy with the process so far, they have been great) But I’m finding myself a little perplexed lately. I wear my WS awareness bracelet. I am THRILLED that the drama club in my school district has chosen the Williams Syndrome Association as their community service project. I will easily and happily discuss Williams Syndrome with any person who wants to learn.
But what about Evan?
about 32 months
Evan is so much more than the term Williams Syndrome. So much more than 25-28 deleted genes out of over 20K. So much more than the starry blue eyes, low muscle tone, heart issues, hypercalcemia, lack of stranger anxiety, the constant song in his heart- that can all be attributed to WS, or not?
He is so much more than that, but….he also is who he is partly because he has WS. It is part of what makes Evan the unique individual he is.
Do you see why I said bear with me? This is tricky. Tricky because now he has a label. He has a label and he isn’t even three years old. Teachers can look up WS on the internet the month before getting Evan in class, and assume that he will be overly anxious, overly friendly, and bad at math. Will they see Evan for Evan? Or will they see WS first?
I teach second grade. And I HEART my students. Big time. I am helping to promote a local event that will support the WSA. There is a ten minute clip that pulls excerpts from the movie Embraceable, that I find to be the most amazing way to learn about Williams Syndrome. You can find the clip HERE if you click on the Vimeo video. The teacher I work with asked if I would consider showing it to my class to spread more awareness with them. I was surprised at how I felt when I considered it. I faltered. I felt anxious, unsure. Would the kids understand? They LOVE Evan. When I bring him into school they follow him around like he is a celebrity. The children in my class are all approximately seven years old. Would this make sense to them? Would they still see Evan as Evan or would this new label be what sticks? Does that matter? I don’t know….
I watch the video clip and I cry. Every time. Not because I am sad. More because it makes sense to me now. Because I see my son in those clips. I see little bits of his possible future. I see myself in the faces of the mothers who are gazing at their child’s colossal smile. And I do not feel at all ashamed or badly. But there is still a part of me that wonders by me pushing the label of WS out there, so boldly, so fervently- what could that mean for Evan?
I want him to have opportunities. I want him to be loved, liked, played with, looked up to, laughed with. The same things most parents want for their child. Do I want him to be the poster child for WS? I don’t know. By blogging and putting our story out there, it certainly seems I do.
This is one of those entries where I would just love to hear your thoughts on this. I have heard from other parents who have chosen to not share the diagnosis with certain people in their lives because of different reasons.
Should we give others the benefit of the doubt and hope that they see our children as whole individuals, and not just a diagnosis?
Labels? Should they stick? What do you think?
|Relaxing after class (and a rainy morning)
Mama, I got this.
That is what Evan seemed to be saying as he walked away from me this morning at his first “Meet and Play” class. I have been calling this class, ‘Preschool Prep.’ I had to do a little mommy maneuvering and negotiating to get him into the program. He is only able to go for three weeks but I was excited to get him into any amount I could. It is a small group class with several teachers and therapists. Parents leave and can watch through a two-way mirror. They do a mini-schedule with the children- with gross motor activities, art, music, snack, etc. I thought it would be a perfect setting to see how Evan might do this fall.
It’s no secret, I am a teensy bit nervous about this fall.
Evan will spend part of his week in a daycare/preschool setting and a few days with my mother, while I return to work for the first time in over two years.
Believe me, I know how lucky I am.
You do not have to tell me twice. I am so lucky to have had this time at home. I am lucky to have a wonderful job to return to where the staff is like family. I am lucky that my mother is able to help out a few times a week to offset costs and to give Evan a mix of socialization and one-on-one time. I am lucky that I found a school for E where I am close friends with a staff member and I felt at “home” the minute I walked through the doors.
But being lucky, and being blessed- does not make me any less uneasy about those first few weeks when we will all be going through a major transition.
Mama, I got this.
Every time I look at Evan lately, he is doing something new and exciting. Eating a meatball, walking all over without any support, opening doors himself, Identifying animals in books with no prompting, telling Zoey to “iiiii-ooooowwwwwnn” (lie down)
It seems he knows I am nervous. He knows I am worried how he will “fit in” with the other children. How will they treat him? How will the teachers handle his need for repetition? His bouncing and rocking? His unusual diet. He is attending school with children who are developing typically. If there are other children with special needs enrolled, I am unaware of it. They will be sitting at a table to eat, washing hands at a sink, using a cubby for their belongings (yes I said belongings), creating art projects, doing circle time, the list goes on.
Relax, mama, I’ll be fine.
This morning, he sat at a table and did a puzzle. He ate a snack with the other kids and didn’t run away. He sat in a music circle (albeit in a teacher’s lap) and did not try to get away. He carried two rubber stars across the room so someone would sing “Twinkle, Twinkle,” to him. He played with watermelon that they had for snack and did not gag or throw up.
He only cried because others were crying. (story for another day)
My little Mr. Empathy.
I walked out of there beaming from ear to ear. I was so proud of him.
Mama, I am going to be fine. Believe in me.
And I will be there waiting at the end of the day to give you a big hug and a smile, I promise.
Trust me, Mama.
Yesterday, on December 14, 2012, a horrific mass shooting occurred in a small, unassuming town in Newtown, Connecticut. This unthinkable event has America collectively weeping, shaking their fists, and screaming at the injustice. It only takes a few minutes of reading through the News Feed on Facebook or reading any comments on articles on news sites to see how this has rocked our nation. I know my blog was not created for social commentary but I cannot move past this day without marking it down and making sure that I remember it, and how it made me feel.
I tend to be a person who walks out into the world without thinking of the evil that can lurk behind each corner. I drive my car blindly, trusting that the person in the lane next to me will stay in her lane. I walk into banks late at night to do my ATM transactions, thinking for a moment that it probably is not the best time to do so, but the odds of something bad happening are so small, why worry over it? I have used Patco with my child, using the Camden station, with only a small amount of healthy caution that I would use at any public transit stop. Even though I have met stares of disbelief when I mention I have taken Evan on the train, and by myself???!! Typically I chuckle to myself internally and think, ‘Ah, how it must be tough to live in that type of fear.’ So glad I do not.
Unfortunately events like today pierce that bubble of security within me in an instant. I feel like a fool for feeling safe when it is possible for an individual to take the lives of 20 children in minutes without anyone being able to save them. My husband could tell I was taking this very hard today, and my mind was elsewhere while we were driving. He kept trying to make commentary on the scenery, to lighten my mood. I could tell he was trying very hard, and I apologized for being lost in thought and explained why. He told me to try not to focus on it too much, that it is a horrible, horrible event, but that we cannot control others.
I know he is right. That is my typical response when tragedy strikes at the hand of another human being. There is Evil in this world, but we cannot be consumed with that fact or we will not be able to live our daily lives.
But for today, for this morning at 2:51 am when I sit in a Kentucky hotel lobby, frantically searching for some sense of peace to hold onto, I am focusing on it. I feel I must. I must be reminded of not only the evil that does lurk within this world, but more importantly, the fragility of life. I feel thankful that I know life does not end on this Earth. That the beautiful, innocent children and the adults who took care of them who lost their lives are living their second chances in Heaven. That belief, and my faith, however challenged it truly is right now- are keeping me afloat in a sea of confusion and doubt.
Driving home from the second exhausting day of Dr. Mervis’ research study, we drove past many gorgeous old homes in Louisville, KY that were ready to be lit with twinkling white lights and had wreaths on each and every window. My heart sparkled for a moment, remembering how exciting the Christmas season is. I still get that rush of joy and pure happiness that I did as a child during this month of celebrations, surprises, and family. It is not as pure anymore, tainted by life experiences, knowing the materialism that comes with the holiday, etc. But I feel so incredibly blessed to have had the holidays I did as a child, and I realized with a jolt that those children had that opportunity stripped from them. Hopefully at their age they had a few years of memories, but now their families are left with gaping holes and searing pain and sorrow.
I thought immediately of my son, Evan, asleep in our backseat. I thought of his future, of his potential to see no race, to lack the social cues and understanding to know why he should not love everyone he meets. My eyes burned with unshed tears, and I fought back the impulse to lose it all together. I felt guilt at how I had been feeling just a few minutes earlier in the exit interview with Dr. Mervis. The words “typically developing children” were used over and over to show comparison with Evan. I have typed those words so many times in IEPs and I just felt so frustrated and pained that now my son will be the subject of that comparison and I will be reading those words and they will not refer to him. They will refer to my friends’ children, to his classmates, but not to him.
And I felt horrible guilt that I was bothered by that when 20 families were receiving word that they will not be able to take home their child that afternoon.
I picked up my sleeping son from his car seat, and sat with him in a dark hotel room, while he clung to me, asleep and exhausted from the assessments that day, and a lack of nap. I thought of his incredible smile, how it immediately captures your heart, no matter who you are. I couldn’t help but let myself imagine what it would be like to learn I had lost him. And it felt like a knife was turning over and over again in my chest.
My internal fists started to shake at the universe. Who cares if he is not “typically developing?” I know it is human to have those moments and I will not beat myself up over it (well at least not for much longer). But to waste time over words, when I have this living, breathing, example of pure love sleeping in his ‘pack and play’ right now, just seems disrespectful to the families who have lost their loved ones. If they had one more night with their child, with their mom, their dad- they would not waste it worrying about words on a paper or words being spoken in a research lab.
And I realize that is all I can do right now. Appreciate what I have and keep trusting. Keep using Patco from Ferry Ave with my healthy sense of caution. Keep driving down the highway trusting that the cars around me will follow traffic law. What can my worry or fear do for me? Nothing that is helpful or honoring to those who are no longer with us and their families who grieve. I will continue to love, continue to trust, continue to believe. It is the risk I must take as Evan’s mother.
I will sum up our trip and the helpful information we received from Dr. Mervis and her team- probably sometime next week. Please know that my issues with the terminology being used to describe Evan’s progress are my own personal hang ups from being a special education teacher for over ten years. We had a really wonderful experience down here and I think Evan’s progress will be enriched by the information we gathered. I just wanted to include my thoughts from today because I feel it is important for me to remember this, and have it to reflect on in the future.