Archive of ‘school’ category

Slow My Roll

I think if I was a little more tech savvy, I could search my past blog posts and find the ones where I have quoted one of my closest friends, Talia, when she says, “You need to slow your roll!” I can remember her using that phrase back when we started teaching together 10+ years ago.

She is very right.

I do need to slow my roll.

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This face.

This guy deserves that.  He deserves much more of course but at the very least he deserves a mama who can practice what she preaches.  I often use the phrase, “Presume Competence.” and I relate it to Evan and his ability to rise to the occasion when you give him the chance.

So why is it so hard for me to remember that myself?

In the past few months, he has started drinking out of an open cup.

He has moved into his big boy room.

Evan bouncing on his bed with his Uncle Joe

Evan bouncing on his bed with his Uncle Joe

And he is potty trained.

Yes, I sure did say that.

Potty trained. (and I’m choosing not put underwear pictures, because I already take a huge risk putting his pictures out there, but I don’t want to go that far…)

My proud big boy

My proud big boy

Ok…so he is not fully potty trained. We are not night training right now and probably won’t for a little while. But he is WAY further along in the process than I ever would have imagined. We implemented the popular three day potty training method (a loose version) a little over a week ago. It was hard. HARD. Three of the hardest days I have had in a long time.  But…..fast forward a week. He has had only a handful of accidents. None at school, and he has gone several days in a row without any.  After being in diapers only for for four years. The biggest accomplishment was staying dry through a very stressful CHOP (Children’s Hospital of PA) visit this past week.  I totally planned to put a pull-up on him before he went through some testing and a very nerve wracking doctor’s visit, but he initiated potty trips while we were there, so I decided to PRESUME COMPETENCE gosh darn it and let him wear his big boy underwear and surprise me.

And of course he did.

This time last week I was sitting at home writing an email to Evan’s ESY teachers preparing them for the possibility of accidents, and letting them know how the weekend had went. I sent in multiple pairs of underwear, extra clothes, the works.  Fully expecting that he would come home in a different outfit. I was a little bit of a nervous wreck all Monday morning. Messaging my WS mama friends asking them if it was too much to expect. Could he make it through a few hours at school without an accident? and maybe I was expecting too much too fast…

Fast forward to Thursday, after four days of school. Every day his very kind and accommodating teacher (who knows I am a mama that needs reassurance) would email me a little update saying, “Yay! No accidents, and a bm on the potty!!!”

That is basically Evan’s way of saying, “Mom, seriously….slow  your roll.  I’m not perfect, as we have already discussed, but I am trying my hardest. Let me try.”

Deep breath….I will buddy, I promise. I owe you that. xoxo

Knock knock.

Knock knock.

 

Time keeps on ticking

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September 2013, 26 months

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Walking in like a boss

A year ago, we took those pictures. Wearing a plaid button down onesie and walking with a super wide gait and arms up like a T Rex, our son plowed his way into school. I wasn’t sure if it was the right time for me to go back to work. The right time for Evan to be in school. It ended up being the PERFECT time for him to be in school. He flourished and was loved. Boy was he loved. Man, I could go on about that school for hours….

Anyway.

Fast forward a year.

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September 2014, 3 years old

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P.S. that is only half of his supplies…..

Evan started official big boy school yesterday. At a school with children in grades Preschool-6th grade. If you know me at all, you know I was a teeny bit of a wreck yesterday.

Yes. You are correct. He did just fine. I thought he would be so tired tonight after school for 4 hours and then going to hippotherapy and riding Vixie. Nope. He was energetic and ready to go until about 8:45 pm. Teacher reported he sang, met new friends, and followed all directions today.

Sigh…..worry really does get you nowhere doesn’t it?

Trust me Mama.

I got this.

I know buddy……….

Let His Best Be Enough

The irony is not lost on me. My son has special needs and I have been a special education teacher since 2000. (with a two year break in there after having Evan) I also have my certification to be a Learning Disabilities Teacher Consultant. (the learning consultant on a child study team)

I taught for 11 years before having my son (now three years old) and all of those year were spent with elementary school age children with varying degrees of need.  Whether I wanted to or not, I gained a truckload of patience that I didn’t have prior to being a teacher. I learned how to see the talents in a child, rather than focus on the deficits.  I learned how to pick my battles with oppositional students.  I discovered that a huge part of being an educator is the relationships you develop with the parents of your students. It has never been my strong point, contacting parents and having difficult conversations about their children. I tend to avoid confrontation and I have never felt confident making those difficult phone calls. Even when I know my points are valid.

But I never imagined how different I would feel when I sat down this past spring to write an IEP (Individualized Education Plan) for one of the students I teach.  I hadn’t written one since the months before I delivered Evan.  I typed up a sentence about this particular student, one that described his dependence on his teachers and one of his weaknesses.  After my fingers clicked away, entering the sentence into the system, I found myself feeling uncomfortable. I reread the sentence approximately five times.  I realized that I was trying to imagine what I would feel like if Evan had that sentence written in his IEP.  Would I appreciate the wording? Would I agree with the observation?  Is it necessary?? Here I was wearing my teacher hat, but my mama bear hat was sewn into the brim and there was no stopping her.  And this same feeling occurred with each IEP I wrote. I thought longer about each objective. I scrutinized each comment. Was I being thorough? Is the objective measurable and clear?

I also found myself feeling more guilty when I would become frustrated with one of my students. After giving the same direction numerous times, and day after day needing to give the same reminders, I found myself becoming short and visibly agitated with one of my students. This particular student is not easily ruffled and it didn’t seem to phase him one bit. Which of course led me to feel more guilt. I can remember sitting at my desk eating my lunch and thinking, “Erin, that child is doing the best he can with what he has.” and my next thought was, “God, please let Evan’s teachers realize that about him.”

“Please let him try his best, and let his best be enough for his teachers.”

20140716_123140Boom.

One of those moments where you feel like Oprah should appear in the doorway saying, there it is! Your AHA moment!

I need to listen to that little voice inside me that prayed that Evan’s best would be enough for his teachers at school.  I need to accept Evan’s best efforts as well.  Not to say that I should not have high expectations for him and help him to strive to rise to the occasion.  But when he does, when he is trying his very best to use all he has to accomplish something and it is just not working out the way it is supposed to….I need to realize that it is enough. His effort is enough. HE is enough.  The word combinations he is making today is enough. The attention span that causes him to flit from one activity to the next- it is enough. The sensitive hearing that has increased in the past month, it is enough.

I just don’t want him to lose his spark.

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zest for everything

Please let his teachers fuel the spark. Inspire him to try his best.

And let me do so with my students.

Let my best be enough.

Labels. Should they stick?

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.

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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?

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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?

Baby Pool

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Where has the time gone??

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

I was wrong.

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

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

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

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

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Buddies for life

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

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

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

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

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

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

Splash. Smile. Release.

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I didn’t know..


First Day of School for Evan (27 months) September 2013

 Well….I did it. We did it. We made it through week one of Project Return to Work. The last day I taught in a classroom setting was in April of 2011.  I was 9 months pregnant and incredibly eager to meet my son and become a mother.  I can honestly say I had NO CLUE what the next two years would bring. 

None. Zip. Nada.

I didn’t know the excruciating pain of labor. 
I didn’t know the extreme joy of holding my first born child after carrying him around for ten months and five days.  
I didn’t know the turmoil that sleep deprivation can do to your emotions and your psyche. 

Saying hi from my classroom.

I didn’t know much I would need and love having my mother in law stay with us when I struggled with anxiety and insomnia in the months after giving birth. 
I didn’t know that being a mother is not necessarily an inherent skill you are born with. It takes work and experience just like any other job. 
I didn’t know that I would miss getting dressed for work in the morning and the adult conversations that go along with having a job outside of the house.
I didn’t know how guilty I would feel for missing those things.

I didn’t know how much guilt stinks. 

I didn’t know  how being a SAHM sometimes feels like high school all over again, with the mommy cliques and the comparison conversations that go on at the playground and indoor play facilities.  
I didn’t know how much richer my relationship with my mother would be through becoming a mother myself.  
I didn’t know how important it would be to make sure to have a child free conversation with Todd every day.
I didn’t know how hard it would be to leave Evan with a babysitter. We still have not “hired” someone outside of our circle of family members and friends. 
I didn’t know how exhilarating it would be to have a baby free dinner with Todd.
I didn’t know we would find out our child has a rare genetic condition.
I didn’t know how life changing a moment in a doctor’s office could be. 

Evan (1) after diagnosis

I didn’t know how hard it would be to be around my friend’s children for a while.
I didn’t know how desperately I would try to find a reason to believe the  doctor might be wrong.
I didn’t know that one day I would realize my child was going to change people’s lives. For the better.  
I didn’t know how music would bring so much joy to our child.
I didn’t know that I would end up taking an additional year off and have no regrets.
I didn’t know how I would go from wanting to work, to not wanting to work, to needing to go back to work and all the emotions that go along with it.
I didn’t know the power of online communities. 
I didn’t know I would make lifelong friends on a support board. 
I didn’t know I would wear a Williams Syndrome awareness tee shirt to the store and hope that someone would ask me about it. 
I didn’t know how the half hour after nap time would become my most favorite time with Evan.
I didn’t know how important early intervention is.
I didn’t know how much I would value Evan’s therapists.

I didn’t know how hard it would be miss some of Evan’s therapy sessions because of work.
Again, I didn’t know how much guilt can really stink.
I didn’t know how hard working moms work. 
I didn’t know how hard stay at home moms work.
I didn’t know conflicted I would feel about being both of those things. 
I didn’t know how hard it would be to give up the amount of control I have over Evan’s life.
I didn’t realize how much I value being in control.
I didn’t know how two big blue eyes could just fill up my heart and tear up my insides all at the same time.

I didn’t realize how blessed I was, and would continue to be. 


 

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The "Right" Time

A lot of emphasis is put on doing things at the “right” time. 

  • Your significant other breaks up with you and says, “It’s all in timing, maybe if we had met a few years ago…”
  •  You discuss with your  spouse about having a baby and you decide to wait a year or two after getting married, because then it will be the right time.
  •  You choose not to move out of your house because the market isn’t good, it is just not the right time.  
  •  You put off going back to school because it is just isn’t the right time, you are too busy.
  • You go to Disney World when the kids are old enough to remember the rides, because that seems like the right time to go. 
  •  Your child isn’t walking/talking/eating/sitting up/smiling yet, and you are told, he is just not ready, it isn’t his time yet.
  •  I’ll go back to work when he or she is_____(fill in age) because then it will be the right time.

Recently this last one has been swirling around in my already full head (not full of smarts, full of entirely too many thoughts).  My last few weeks have been filled with mixed emotions.  One minute I am talking a mile a minute to a fellow co worker about our class this year and feeling the excitement and jittery nerves that come with planning for the school year. The next  minute I am sitting slack jawed watching Evan as he stacks almost five blocks on his
own and reveling in his progress and how much I adore him.  Of course in that minute, I am struck with the realization that my face to face time with him will be less come September.  And sometimes that realization just feels wistful and sort of sad, but sometimes it feels overwhelming and like a brick is sitting on my chest.
 I know, yikes.
This coming from the girl who sat holding a newborn baby in July 2011 and could not possibly imagine wanting to be a stay at home mom for very long at all. Sigh…..if I could just talk some sense into that girl.
Anyway……what I am getting at is this. 

Up, up, and away!

Evan will be going to an public preschool when he turns three.  It is inclusive, meaning that he will be with students with and without special needs.  He is already eligible for the program because of his enrollment in the early intervention program.  Even if I was able to stay home another year, fast forward to the month before he goes to preschool, and I can almost guarantee I would have be having the same feelings. Fast forward two years to when he goes to kindergarten. Same feelings. Fast forward to the summer before seventh grade when he is going into the junior high school. 
Yup, you guessed it.

 Ditto.
The “right” time is sort an illusion.  A concept to help us feel like we are making the right decision. Ugh, that word right just keeps coming up.
It would be awesome if there was a test you could take to tell you it was the right time to do something.  
Kind of like in YM magazine. “Are you made for each other?” “Are you more romantic or athletic?” “Are you ready for a boyfriend?” 
Man I loved those quizzes. They even had an issue that was ALL quizzes. But I digress…..

Maybe Julia should have taken a quiz before deciding on this haircut.


The point is, there is no litmus test to tell us when the right time is for any decision, change, of life event. So for me, it is just a matter of taking a deep breath, keeping the faith, and making the leap.  And I need to keep in mind that there are MANY others who have taken this same leap and landed quite nicely on the other side. I have plenty of people holding a safety net for me when I take these leaps. Lucky gal, I am.  

About to take a leap

Stumbling a bit, but I got right back up again.


 Disclaimer: Those pictures were actually a reenactment. We were trying to reenact the opening scene of The Sound of Music where Maria spins in a circle filled with hope and glee. We were visiting the Trapp Family Lodge in Vermont. I don’t want you to think I put copyrighted material on the blog since it looks so authentic.

🙂