Senior Pictures

Last weekend we had senior pictures taken of our two graduating girls. They are 9 months apart in age and became sisters when Callie was 2 yrs. 9 mos. and Little Sis was 2 years.

Quick note about the names of my kiddos. I will be using real names mixed with pseudonyms. It may not make sense as people who actually know us will know who I’m talking about but that’s what I’m going to do. I will be using Callie’s real name as I plan to blog about her often. There are reasons as to why that is acceptable to me and reasons as to why I won’t do that with other family members and that’s enough said.

My girls are different in so many ways. Callie has intellectual disabilities, autism, anxiety etc. She had a real difficult start to life as a micro-premie who was essentially abandoned in the hospital. She’s had a really tough time, but she persists like no other. She is truly amazing.

Little Sis was with us at 6 weeks, was cared for well before she came to us which is not to lessen the trauma/abandonment that all adoption may bring, but she is an overcomer like no other. Don’t get me wrong, it’s not been an easy road, but she is in an amazing space now and we are so very proud. She is smart, sassy and super secure in who she is.

Taking their pictures was bittersweet for several reasons. Whenever your kid is taking senior pics you just can’t believe that time is here. No matter how many times you’re here and we’ve been here 10 times before, our first was our long term foster son in 1988.  Also bittersweet as the last girl we graduated was our Shannie whose senior pics popped up on my Google “Rediscover this day” – today. She died about 7 months later and senior photos, let’s face it eventually they’re not all that important, but these….these were never more important to me. Especially important is the photo of the three of us – her dad and I. Neither one of us was prepared for a photo but I was never happier to be photographed in my less than perfect glory because it’s the last picture of the three of us that we had taken where she was happy and feeling good.

In homage to their big sister each of my girls wore a special necklace of mine in their dress up outfits picture that Shannon also wore. Little sis who isn’t particularly sentimental also wanted to be sure they took a picture together, holding one of Shannie’s stuffed lambs, sitting in front of Shannie’s apple tree. My heart was full seeing them in that space honoring their sister.

I must also mention that our photographer is a young woman who has taken all our family photos and was also Shannon’s personal care attendant for years. I’m forever grateful for her and her gift of photography which captured our beautiful girl and her smile – the way we want to remember her.

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Dear Typical Mom

Dear Typical Mom,

I’m sorry.

I’m sorry that when we lined up for seats on the Extreme Swings at the amusement park today your tween-age daughter got the seat next to my teenage daughter.

Sorry that your girl was too uncomfortable to sit next to my girl. That she was so uncomfortable that she traded seats with you, and very sorry that you let her.

Sorry you missed an amazing teachable moment with your girl.

You have no idea of the opportunity you missed.

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You missed teaching your girl that she should show respect to those who need a little extra loving care. Even if she was too freaked out to sit by my girl you could have, at the very least, modeled it for your girl. You could have talked with Callie, introduced yourself and your daughter – anything to show your girl that you valued my girl.

You missed knowing a girl, if even for a few minutes, that rode the Extreme Swings and then went to the children’s area to ride the children’s swing ride with just as much unabashed enthusiasm.

You missed spending just a few moments with a girl who demonstrates Satchel Paige’s “Dance like nobody’s watching” quote better than anyone. She jammed to a tune while she waited to ride on the Enterprise, a spinning ride that is vomit-worthy, while others backed away from her. I don’t know if it was because they didn’t want to be near her or because she is a brazen, audacious dancer and she never, ever gives the gawkers around her a second thought. She dances without regard to the stares because, well, because it truly is nobody’s business and unlike most of us, she embraces that. I absolutely adore that about her.

I’d say it’s your loss, but it’s my girl’s loss too. Every time she is ignored it is a missed opportunity to practice her social skills.

So, truly, I am so sorry. Sorry that you missed an opportunity to meet a person so uniquely made, a mold breaker to be sure. I know I’m biased, but I’m pretty sure you missed a one in a million opportunity.

Sincerely,

Mom who is proud of her atypical girl

 

French Fries With a Side of Flirtation

Today’s after church lunch at Culver’s, a fairly regular event, was quite amusing – to us and those observing us.  For some reason Shannie often cries when we arrive somewhere other than home until she settles in and decides to stop – generally 5 – 10 min. tops.  Today she was pushing 10 minutes, but finally settled.  That wasn’t the amusing part.

First Ella, Jacob, Christian, Callie and Jacob thought they’d sit at one of the high tables.  So, we grabbed two of them next to each other.  All this time Shannie is crying and people are staring.  Then Callie decided she didn’t want a high table and I convinced her to wait to move after her dad returned from the rest room.  Then we moved and Ella, Jacob and Christian stayed put.  Thankfully before our food arrived Shannie settled in and stopped crying and the staring became less obvious and more furtive, my preferred type of observation.

When the food came everyone settled in some and all was calm.  Pretty soon I noticed Christian was grinning ear to ear and glancing over to the counter gesturing and nodding his head.  Pretty soon he was leaning back with his hands behind his head and adjusting his shirt.  Jacob comes over giggling about how he’s trying to impress some girl.  Christian kept saying, “What? What?”  like – it’s all good, nothing going on here.  We all got the giggles and Ella was rolling her eyes and moving away from him.  It just became hilarious.  I don’t know if the girl said “hi” – she certainly didn’t approach him in any way.

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I teased him a bit about it in the van and when he got home he told Jacob she was his girlfriend.  I’m pretty sure that’d be news to her and he didn’t seem to know her name, so that makes it kinda tricky I’m thinking.  It was so funny to watch him attempt to impress her with his somewhat limited flirting skills.  Gotta admit – Christian had more game than a lot of 14 yr. old boys who’d never have the confidence to even look in a pretty girl’s direction.  She may not have given him the time of day, but he still enjoyed every second of the experience.

Medically Fragile Kids are Students First in School

Yesterday was Shannie’s IEP.  Mark went as we had some concerns and I knew he would make the case in a non-emotional, calm, cool and collected way. He is just so much better at getting the same result with less emotion involved in the process then I am.  I’m always so grateful to have a partner in these situations.

Shannie is in a classroom geared for kids who are classified as medically fragile.  She definitely qualifies, but only in the technical sense as far as I’m concerned.  She hasn’t been in the hospital for illness, always pneumonia, in over 10 years.  All other times were scheduled orthopedic surgeries.  Compared to many kids in this classification she’s on the milder end – no trach or ventilator – for which we are super grateful for sure.

Our main concern was that Shannie be treated as a student at school, not a patient, and sometimes it seemed as if that line was blurring.  Often her notebook came home with oxygen stats or temperatures on days when she was not the least bit sick.  In fact she’s maybe missed 3 days of school this year due to illness, general illness,  not life-threatening illness.

I tend to prepare myself for a possible fight in these situations, but more often than not, when we lay out the issues and clarify our expectations all is well.  In this case, Mark shared with her staff the anxiety Shannie feels surrounding medical situations and whether her anxiety was playing in to what they perceived as illness at school.  Everyone seemed surprised that she responded with anxiety – to the point that versed, an anti-anxiety med which also produces amnesia, – is given to her as soon as she enters the hospital for the injections she receives four times a year under anesthesia.  She has been known to raise her temp. several degrees when she is anxious.  This is why I was so concerned that the hyper-vigilance over her medical issues be dialed back.  She has enough real issues that have to be dealt with, let’s not pay attention to anything that’s not a real issue.

Shannie often freaks out people who are not familiar with her frequent coughing, rattling in her upper chest and occasional gagging.  We, who are familiar with her, know for Shannie, this is normal.  It is always upper, as in back of her throat, respiratory stuff.  It is very rarely actually in her lungs.  Her “normal” takes some getting used to and absolutely requires some relaxation on the part of her caregivers.  You can not get worked up over every funny sounding breathe or muscle cramp/jerk, seizure etc. or you’ll make yourself sick with worry.

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Yesterday was a great example of the purpose of an IEP, in my opinion.  It helps clear the air and get everyone on the same page.  Ultimately, with Shannon, we are the ones who will pay the price long term for whatever decisions are made regarding her health.  Our goal has always been for her to be comfortable and experience as much in the school setting as possible.  When she is a student first and a student with some medical issues second that goal is a lot more likely to be achieved.

Obsession

Remember the perfume Obsession?  They made it sound so alluring, captivating, enticing and, of course, sexy.  It’s also a synonym for fetish or mania – doesn’t sound so alluring now does it.

Dealing with a child who is totally obsessed and can’t be redirected is exhausting.  Yesterday Callie was in a very obsessive mood. The other kids are more than aware of her over the top one track mindedness too and they know we try to avoid anything that brings it front and center to her mind.  At church they were showing a DVD about a marriage conference and Jacob ran over to me and said, “Why are they showing this it’s just giving Callie ideas!”.  He knew what it would likely lead to and it did.  She spent the rest of the service trying to touch, hold hands or kiss whoever she could capture and generally make completely uncomfortable.

We will not be purchasing any Obsession any time soon around here.  Why purchase something you can get absolutely free?  What I’d like to be able to do is sell it.  Not the perfume, the less good smelling mania version – anyone?  Anyone at all?