The need to write today

August 19, 2014 § Leave a comment

I have learned that blogging so helps me process my own thoughts and emotions. Sometimes there are posts I don’t share. Not sure I’ll share this one either.

In writing from the surgical waiting room at Children’s Hospital in Boston.

I just left my daughter in the O.R. after watching her being sedated. It’s certainly not the first time I’ve done this but it NEVER gets easier. Just walking away and leaving her life in the hands of strangers.

As mentioned before the risks of anesthesia are high stakes for people with Williams Syndrome. There is extensive protocol and I am hoping it was followed closely enough today.

Her procedure today is extensive dental work – it’s not a super big deal like many of the people go through with Williams Syndrome. We thank our lucky stars that her heart is relatively sound where as most people with Williams endure far more complicated cardiovascular issues and surgeries.

My observations in the waiting room are this: the woman next to me is trying to give kind smiles as she frantically prays on her rosary beads, then guy to be right is totally plugged into his iPad watching a movie or something. Beyond him is a young couple who have been right along us since check in – the dad had also brought his daughter back and he has been as sniffly and weepy as myself until he got a text that made his wife totally pissed off – that was entertaining.

There is a person who hasn’t shut the volume off on his phone and getting texts every 10 seconds – grrrrr.

There is a woman arguing on the phone with her mother.

So far it’s a pretty sucky environment.

Tim has traveled to the gift store as Ari has requested a huge stuff animal to be waiting for her when she wakes up.

We should be getting an update on our girl in about 30 minutes – I really can’t wait to give her a kiss and hold her hand and see those big blue eyes.

How to prevent regression

August 10, 2014 § Leave a comment

Every year at the end of the school year I send out an email of an article entitled “it isn’t regression.” I send it out because the end of the school year is hard for many kids and they often slip into old patterns they have worked hard to overcome. But for one second I do not believe they have actually forgotten what they have previously learned – information doesn’t magically leave your mind – but under times of stress all of us choose what’s easiest to make it through the day.

Summer services at schools are often given to students over the summer months to prevent regression. Kids go to their respective schools for some tutoring in areas of weakness. We did it for years – why wouldn’t more of the same be even better?

Until I realized it’s a crock! Lol!! Sorry! Yup, that’s what I think – bringing my child to school for a couple hours a week to review the past years curriculum with (most likely) a teacher she’s never met before while her friends are at the beach. Yeah pretty much a crock.

Don’t get me wrong I’m not about throwing the baby out with the bath water here – I think it’s important to read over the summer but doing it cuddled up on the screen porch is far more enjoyable. And I think math too is so important but only so far as it’s functional – so we’ve done a lot of cooking and measuring. And then there’s writing – texting is still sentence development and a cute little blog to practice generating expressing ideas – doesn’t seem like work. Far more functional!! And way more fun!!

Social – yes her school based summer program used to have a social component – but she would come home stressed because many kids were lumped together and the behavioral kids could be intimidating. So three weeks of full days with Drama Kids International brought her joy, allowed her to see many friends, worked on public speaking and performance. Drum lessons added into that – we’ll um they say music is math and the rhythm seems to carry over adding rhythm to her day.

We have seen so much growth in so many ways from our girl this summer – ways we never expected because she didn’t have the stress of school on top of her regular days.

I believe by choosing not to participate in summer school this year we actually prevented regression.

Enjoying the in-between

August 4, 2014 § Leave a comment

You know that saying “When it rains it pours?” Well I am feel like the clouds are rolling in and it’s getting ready to pour.
– my grandmother is very ill
– Ari’s dental surgery is suddenly scheduled in 2 weeks (on my birthday – 2 days before hers)
– we are still processing the news from last weeks orthopedic appointment – knowing that probably within a year my girl will need extensive spinal surgery.
– always knowing that an Anesthesia is very risky for Williams Syndrome patients sends us reeling (it’s just part if the deal). – yes we are hugging her a little longer and tighter these days.

And it’s all happened in a matter of days – never mind dealing with back to school , IEPs and my moms ongoing chemo – I’m kind of “done” . I have very little patience left for “bullshit”.

I am excited about enjoying the rest of the days in the summer and since I have experienced it “pouring” several times before in my life I know it’s not worth it to sweat the small stuff – and I don’t! And I don’t let it ruin the moments in between either. I’m not perfect at this yet and you may catch me now or then lost in my thoughts.

I am NOT complaining about my life – I LOVE my life and all those in it – I AM BLESSED – but I just feel I wanted to share what’s happening so we don’t have to explain it too much in the future.

For now I am looking forward to a lot of fun family time that is planned and ready to go – love seeing my kids relaxed and happy !

Screen Porch Chats

August 1, 2014 § Leave a comment

One of the best parts of summer for our entire family is our screen porch. It’s comfy and inviting and inspires the best conversations.

It’s also the place where the kids often complete their summer reading for school.

Arianna is preparing for Middle School in the fall. She was assigned a choice of several books for her summer reading. I actually chose the one for her I thought she would like best without consulting her because I was in a “just get it done and order it off Amazon mode.”

Well I have to tell you I only read the very brief summary offered online.

The book is “Because of Mr. Terupt.”

One of the things that happens in the book is that the students from Mr. Terupt’s room go to visit the students down the hall in the “collaborative” classroom.

So here is Ari who self identifies as a person with special needs but truly leads a “typical” life style and ….. her wheels were spinning.

As we read together I became so very proud of my daughter and her ability to take perspective on this part of the book in a way that I never could and most of us never could.

She identified with both the typical kids and the special needs kids.

We talked while sitting on the screen porch for a long time about all of this. It amazes me how much she knows about other disabilities too.

She ended with asking me “How can I help kids with special needs? I want to be there for them.”

All of this so twisted up in varying perspectives, a conversation I could never have imagined and I know I am failing to explain clearly. It was nothing short of beautiful.

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