Man crush

Back in the spring of 2005 I met Brandon for the first time.  If I’m being honest, I can’t say he made a huge impact on me that first meeting… he felt differently about me (wink, wink).  I mean, we were in a staff meeting – I was in a relationship – I was not out looking for my future spouse, let’s just say that.  Anyhow, the following fall, we spent a lot of time together and became fast friends.  While some of his quirks drove me up the wall (and still do some days… the feeling is mutual, I’m sure), some things about him stood out to me in the best way.  There was a night when we made a run to Kroger, for example.  It was cold and rainy, dark, and I was in a hurry.  When we got out to the parking lot, there was a couple with their hood popped open whose car wouldn’t start.  He walked over to them and talked a bit, then came back to ask if I had jumper cables.  I didn’t… I told him we couldn’t help.  That’s when he started approaching random strangers asking for jumper cables and continued to do so until he found a pair (short pause to appreciate that Brandon HATES talking to strangers), then had me pull up so that he could jump their car and help them on their way.  I was annoyed, to be honest – but his determination to help made an impact on me. 

Fast forward to 2008ish when we were dating and living together – both out of college at this point.  We were broke.  Broke, broke, broke (channeling my inner Renee Zellweger from Jerry Maquire here).  We had a weekly grocery budget under $50 – that included eating out, toiletries and all.  Anyhow, we were enjoying a rare dollar menu meal at McDonald’s one day when a man came in asking people for money.  Brandon bought him a meal.  We’re never sure if people who do this really need money or are trying to scam people, so we were hesitant.  When we saw this same man fishing half-smoked cigarettes out of the ashtray outside and putting them in his used Altoids tin, we knew this man really needed help.  We went out the car and Brandon drove over to Walmart.  He bought gloves and a hat, some hand warmers and a coffee mug, some ready-to-drink soups and a collection of toiletries and then a cinch sack to stuff them all into.  We rushed back to find the guy making his way over to the gas station close to the McDonald’s and Brandon got out, handed him the bag, and gave the man a firm handshake.  I’ll admit that I was kind of freaking out at Walmart as he was throwing things in the cart… remember, we had a $50 grocery budget and we needed to eat, too.  Trust me, we never missed a meal.

As for me, I’d never really seen anything quite like this.  I really hadn’t.  These kinds of occurrences would become more and more frequent as the years went by.  Sometimes, the people he’d help would walk around the building, hop into a car, and speed off… sometimes, that would break our hearts.  Sometimes, though, we’d share a meal at a picnic area with a hitchhiker who had no family and was just passing through, thrilled to have some company to eat with (even if he wasn’t thrilled with the turkey and humus wraps we were serving up). 

Four years ago, Brandon was working construction.  He’d leave a job site in Troy and drive the hour and a half each night after a long shift of hard work so that he could stand over the bed of his little girl, shed some tears when I explained to him all that had happened that day, then crash his tired body onto the tiny blue couch next to me for the night.  He’d get up long before dawn each morning to again trek an hour and a half back up I-75 to the job site and put in another long day of hard, manual labor.  He did this six days a week for four months.  Back and forth, back and forth… tirelessly making a trip so that he could spend just a few minutes at her bedside and a few minutes catching up with me before we’d crash for the night.  It was during this time that he told me how he’d always wanted to go into medicine… how when he was younger he really wanted to be a pediatrician.  And how he really thought he wanted to go back to school to be a nurse.  As crazy as it sounded to me then, I knew it would be a good fit for him.

Another eight months or so would go by before Brandon would see his first clinical rotation.  I remember him coming home almost in tears asking me if we could make a trip to Walmart to buy some sweatpants, tshirts, socks and underwear for an old man.  He said that his patient was literally wearing clothes from the lost and found because he had no personal belongings… and this absolutely broke Brandon’s heart.  I knew that day that my husband was exactly where he needed to be.  And while, we can’t always just go buy clothes for patients or afford to buy them the things that they don’t have – we can always give them our love and attention – give them the dignity and compassion they deserve.  In this, Brandon has taught me so much!

Maybe some of you have only ever seen the sarcastic side of Brandon – he likes to whip that side out a lot.  Sometimes he likes to share his opinion, whether it’s welcome or not.  But there’s another side of him… a very soft, vulnerable side that he’s probably not thrilled I’m sharing with the world… a side that makes him a great husband… a strong father… an amazing nurse… a side that he doesn’t always share with the rest of the world.  This side of him came out in amazing ways when I watched him address his classmates during his pinning ceremony on Thursday.  He made the crowd laugh on multiple occasions… and delivered a speech that pulled at the heartstrings and moved me to tears.  I am so incredibly proud of this man!  SO INCREDIBLY PROUD!  I do not tell him this enough, that’s for sure.

In fact, when we were on our way home from dinner after the pinning ceremony, I started asking him about future plans and ultimately kind of jumped down his throat for not applying for a job that has great benefits for the long run… like retirement benefits.  But see… that’s me.  I’m the one who thinks of things like retirement and insurance and the practical things (like that $50 grocery budget in 2008).  He’s the one that’s driven by the passion to do what he loves.  And you know what – I was wrong in that.  I know that he’s not the one that’s moved by a killer retirement plan… that’s not his thing.  I look back at these pictures of him standing over Ellie’s crib… he’s the man that’ll drive three hours a day to spend a few minutes making sure this baby is okay.  That’s not practical… that’s passionate.  He’s the man that spent more than half of our grocery budget making a care bag for a homeless man… and yet, we still ate.  Me… I’m practical (emotional, yes… but practical).  He’s passionate, but very level headed.  That’s our balancing act, y’all.  So at the end of the night… a night when he killed it at his pinning ceremony… a night that was all about his amazing accomplishments… a night where we were out to celebrate the culmination of so many years of hard work on his part… I kind of blew it.  Fail.

But all of that aside, I want to share a snippet of what my absolute favorite part of his speech was.  This was a part after he’d made jokes about not heeding the warnings of the professors and how many days and nights were pushed through with the sheer force of determination and massive amounts of espresso.  Then he said:

“Then, there were the nights where no amount of caffeine was going to pull us through and we had to pick up another one of our nursing school survival tools: Our list of ‘whys’.  As in, ‘Why in God’s name would I do this to myself?’

My list started with my children, but particularly the strongest person I’ve ever known: my daughter.  Standing three-foot tall and thirty-two pounds, she’s the epitome of determination, strength and probably one too many curse words for a four-year-old vocabulary (I may have had a part in that).  During the longest of her inpatient stays, four of the first six months of her life, battling the increasingly debilitating effects of a congenital heart defect, she taught me more about life than I had gathered in the twenty-nine years prior.

It was also during this time that I added more ‘whys’ to my list: Austin, Khloe, Jaxson, Jack Jack, Dominic, Tillery, and countless others.  Reluctant tenants of the Ronald McDonald House, our families would share so many tears, laughs, and even a humorous dream of the ‘complicated kiddos community’ we would one day form – I was designated to be the nurse.

Though distance has separated us, and some of these little ones remain with us only in memory and spirit, these kids, their families, and the incredible nursing care provided to them continue to be a part of what pushed me into nursing – and what would drag me through when I wasn’t sure I was going to make it.  To be able to care for incredible souls like these – that is the dream I long for.

So, I challenge my fellow classmates: In those moments where you think you’ve given all you have and start to question if nursing was the right choice, re-evaluate YOUR list of ‘whys’.  For the premature newborn struggling to breathe with lungs that aren’t quite ready, for the newly widowed husband or wife of the hospice patient who’s finally resting peacefully, for the children dealt the difficult hand that need every resource available to live their best lives – always remember your why.”

I don’t think I need anything more to close this out with… I think his words are perfect.  And I think it’s safe to say that he’s already a great nurse… his heart is in the right place… and this is absolutely the right career for him!  Proud of you B!

Rocking the mic!

Pinning :)

Proud family/cheering section... only PART of the cheering section... Beech, Sheryl, Denny, Tiffany, and Whitney were also there.  This was just my early shot when I was trying to entertain the kiddos.

Throwback to 2014 - a very tired man looking over his very tiny Bug.

Bargaining: the future is still bright for our children

Let me start by introducing you all to something my colleagues and I are all too familiar with: the reaction roller coaster (allow some time for eye rolls from all Health+Fitness employees).  For those of you that aren’t part of my work family, this may be a new concept to you.  Let me give you a quick synopsis:  when presented with change, we all go through six different stages in our transition as we “embrace” the change… and we can progress through these stages at our own pace, even slipping back and forth along the slopes of this model.  The stages age: Denial, Anger, Betrayal, Ugh, Bargaining, and finally, Acceptance.  When late last week, a large school district in our county announced that they would be pulling their support of our county preschool program back to an in-house program, taking all of the kids on IEPs out of this county preschool program back into their district without having any details or plans ready to present on this topic, my reaction sped past Denial, and festered on Anger for at least 24 hours.  I was absolutely HOT about this.  Since then, I’ve had some time to think about exactly how to react and how to explain to the community what this actually looks like from a parent of a kid on an IEP.  So I’m not here to point any fingers or place blame.  I’m simply making this post so that those of you on the outside understand what DOES happen to kids on IEPs all over our state… and what we’ve come to know here in Shelby County.  And finally, I’ll give you all a glimmer of hope – teaser alert:  I’m solidly standing on “Bargaining” right now.  I don’t see myself moving past this, though. 

First, let me share a few stories of what is perfectly acceptable outside of Shelby County.  I’m not saying anything bad about these situations, but I don’t think parents in Shelby County know how different our situation is here.  For my friend living in an adjacent county, she brings her son (on an IEP) to his half-day preschool and they set goals just as we do.  She’s been told on multiple occasions that she should be conservative in her goals for him because holding the therapists accountable for meeting those goals seemed tough.  On top of his half day preschool, this family takes this little boy to an off-site therapy program at a local hospital for 2-3 appointments each week.  They also hire a private physical therapist to come out to their house to give their son additional PT because what he’s already getting isn’t quite cutting it.  Over the summer, this family has their little boy enrolled in another private therapy program that costs the family about $300/ month.  This is a healthy, good example.  This is a little boy that’s doing well and has parental support that is fighting like crazy to keep him on pace with his peers.  But were you keeping track of how much of his therapy had to be done outside of school hours?  How much of the therapy his parents were transporting to and from?  Almost ALL of it. 

Here’s what’s different at Shelby Hills: Ellie goes to preschool half days and is transported to and from school (I know that not all kids qualify for transportation… but some do).  Ellie gets 1:1 sessions of Occupational, Speech, and Physical Therapy every week.  She also has sessions where OT and ST push into her classroom and do sessions for her entire class (twelve kids) so that they’re all learning key concepts together and they have gym together as a class where they practice specific things worked on in PT.  Now that she’s out of Early Intervention, she does not have therapy over the summer, so we do have to supplement there… and we’ll likely take the same route as the family listed above next summer with the specialized therapy – but for the nine months of the school year (and through all of the Early Intervention program), we never had to go to a single outside therapy session.  And the note on IEP goals: when we sit through IEP planning and meetings in the spring, I’m sometimes shocked with how aggressive the goals are that Ellie’s therapists are setting for her.  However, these are people who know her very well – they work with her every week (no contracted out, rotating faces here).  As for this year, she’d met all but one of her IEP goals for this school year by the time we met for our first parent-teacher conferences.  While many programs would check the box as complete, Shelby Hills said, “Okay… let’s set the bar higher.  She can do so much more.”  So in October, we were already revising the IEP goals for this school year and shooting higher – suggestions offered by her therapy staff.  Does this mean more work for them?  Absolutely!  Because, let’s be honest, I’m a very busy mom… we spend our free time cuddling and playing… not practicing walking up and down steps.  The credit for Ellie’s success belongs firmly in the hands of those therapists who know her well and push her a little further each and every week.

Does the state mandate that Ellie have 1:1 therapy sessions?  Nope.  Does the state mandate that her class size in Shelby Hills only have 12 students in it?  Nope.  Here’s another fact:  Shelby Hills has a 1:1 ratio of typical and non-typical students in their classrooms.  So in a class like Ellie’s, there are six kiddos with some form of special need (likely on an IEP) and six more kids in that classroom that have no special accommodations (typical learners).  This classroom has one teacher (holding a master’s degree in special education) and a paraprofessional.  Some classes have additional aides in the classroom, too.  So the ratio of teachers to students is no higher than 1:6.  That, my friends, sets these kiddos up for plenty of individualized attention and success in their most formidable education years.  Do you know how many kids on IEPs CAN be in a classroom?  I think it’s 20.  If Ellie were in a classroom with 20 kids on IEPs, I cannot imagine that she could even focus, let alone progress at a noticeable rate.  And in case you’re in our shoes and pushing for full inclusion in kindergarten, it’s crucial that Ellie sits in a classroom where 50% of her peers are typical kiddos.  This benefits both the typical and non-typical learner.  I can shove studies down your throat on this if you want… but seriously, just trust me on this.

I have another friend who I met while attending a class on how to enhance the educational success of children with Down syndrome.  In talking with this mom, she told me about her son, now in first grade, and strictly in a special education classroom.  When she started explaining how this happened, she said that when the district came out to assess him for preschool (this is called an ETR: Evaluation Team Report), they “couldn’t recognize American Sign Language as a legitimate form of communication”, so they rated him so poorly that he wasn’t able to attend a preschool classroom with typical kids and as a result, wasn’t able to attend kindergarten in an inclusive setting, either.  This mom went on to say that at the time of the ETR, her son was not quite 3-years-old and knew over 200 words in ASL.  And they said that he couldn’t communicate.  I looked at her with what surely was the most horrified look in my eyes.  Ellie was three at the time and signing about 150-170 words… communicating fluently with us through sign.  Kids with Down syndrome are generally very late talkers – Ellie especially so because she spent so much time completely silenced by her trach.  We worked our tails off learning sign language and teaching her as much as she would pick up… and boy, did she pick it up.  At three, when she finally started to sound out a few words with her mouth, we kept signing, but let the ASL drop off a bit.  When we enrolled in Shelby Hills, Ellie was assigned to a classroom with a paraprofessional that can fluently speak ASL.  She was literally speaking sentences in ASL to Ellie at open house… I was in tears.  Instead of closing that door on us… and putting us in the position that this other family was put in… they made arrangements so that Ellie could thrive.  Furthermore, Ellie’s class learned to count and fingerspell the alphabet.  Her classmates all learned enough ASL to communicate with her last year.  That’s incredible, y’all!  Incredible!  I’m still heartbroken for the family whose son’s vast vocabulary was written off and they were told that ASL couldn’t be recognized as a viable form of communication.  But the reality is… this stuff happens… more often that you’d ever imagine.  That same district would never tell the parents of a child with hearing impairment that same thing, I guarantee that… but for whatever reason, they felt like it was okay to say to a family whose child had Down syndrome.  Side note, that little boy is talking fluently, just like his peers, now… but is so far behind his typical peers and has never been in a classroom with typical peers… so his parents aren’t comfortable making the transition out of a specialized classroom.  Heartbroken.

I have stories like these for days.  Stories where other districts were working within the state guidelines… or justifying themselves just enough that parents felt like they didn’t have other options… and the services rendered were not up to par with what we’re used to getting at Shelby Hills.  Can I share just one more story?  This is a story from right here in Shelby County… but not from preschool.  This is a story about the dedication of staff at Shelby Hills (someone on staff that works with both Early Intervention and Preschool).  There’s a family in our county who has a little one who was doing great with therapy… but wasn’t growing much at all.  This little dude just wasn’t getting any bigger, despite lots of efforts from therapists and his pediatrician.  He was referred to a specialized feeding team at Cincinnati Children’s hospital.  When his mom told his Occupational Therapist about this appointment, the OT asked if it’d be okay if she came along.  For those of you not from our area, we live a full two hours away from Cincinnati Children’s hospital.  And for those of you confused at why OT would want to go, when babies qualify for Early Intervention services, OT usually serves as a feeding therapist for a long while, if needed.  Basically, this therapist was offering to drive all the way down to Cincinnati to attend this appointment for her patient so that she could meet the feeding team and make sure that she was on the same page as the feeding team.  She could share information with them to let them know what they’d tried from an OT perspective and they could give her pointers on how she could customize her treatment plan to better serve this little guy.  If you’re not completely amazed right now, you weren’t paying attention.  This OT went way, WAY out of her way… far beyond the expectation of her job role to make sure that she would give the absolute best care to this little boy and his family.  Why did she do this?  Because it’s not about her at all.  This same therapist came out to our house in the evenings when she was doing feeding therapy with Ellie because we were struggling with how Ellie was eating for one of our nurses.  She worked late and flexed her schedule to make sure that she was able to meet with our evening nurse and get Ellie’s feeding straightened out for us. 

So, are we spoiled in Shelby County with the service we’ve gotten at Shelby Hills?  Without a doubt.  We are absolutely spoiled.  But I don’t think all of the parents here know this.  I don’t think they know what losing a resource this great actually means.  But on the flip side, do I think Ellie deserves this kind of care?  You can bet your butt I do.  Without a doubt.  I’ve already been asked why I care so much about this change… after all, Ellie only has one (maybe two) more years of preschool left and we’re not even in the school district that’s impacted by the recent decision.  I care – I care with every fiber of my being that all of the kids in the county have the care that they need – not the minimum level of care that they have to have – but the amazing, over-the-top level of care that they really do need to thrive in life.  Even if Shelby Hills were able to function at the same capacity even after this change happens (which is unlikely), I still care so deeply... because it's about those kids.

The problem with some district officials, I think, is that I’m not sure that they look at Ellie and really SEE her.  When you look at Ellie, do you SEE her?  Not just as a cute kid with a disability.  Not just as an obstacle in the classroom.  Not just as a means to an end.  Certainly not as a solution to a budgeting concern.  Not as a dollar amount that the state will send to your district for offering her a certain level of services.  Do you instead see her as a person full of potential, hopes, and dreams?  Do you see her as someone who deserves MORE?  More than the minimum necessary?  More than what the state mandates?  More than a few minutes a month of specialized therapy? 

I can promise you that the staff at Shelby Hills not only sees her as a child with hopes, dreams, and potential… they treat her like a child who has opinions and a voice that matters.  They treat her like a child whose complex history matters, but also as a child who is capable.  Capable of academic success and real friendships with all of her peers.  Worthy of dignity and an abundance of attention.  You see, parents… especially parents who are directly impacted by this change – those who ARE in the district impacted… the good news here is that you have a choice.  You have a choice when you sit through your IEP meetings.  Your child has a right to attend school in the Least Restrictive Environment.  So while this is all very daunting.  Know that you have power – you have the power of bargaining here.  We can ensure that our kids still get the utmost care – the level of acuity they deserve.  When you’re staring down your first (or next) IEP meeting, ask yourself the following questions.  If your district isn’t able to check the boxes in the way you feel is LEAST RESTRICTIVE for your child… then you have the right to keep your child in the school that does provide these things.  As parents, you absolutely know what is best for your child. 

•           What is the teacher to student ratio in your classroom?
•           How many aides are available in each class?
•           What resources are readily available for non-typical communication?  ASL trained staff/communication devices, etc.
•           Is your classroom handicap accessible?
•         What is the ratio of typical to non-typical kids in your classroom? (remember, if you plan to do full inclusion in kindergarten, this is a very BIG deal)
•           Is there a nurse available full-time in the building? (this is more of a concern if your child has any special medical equipment/needs… this is a biggie for us)
•           How many hours per month will my child have of 1:1 OT, PT, and Speech?  (not combined therapies… and NOT combined minutes with other students… that’s important)
•           What kind of modification ideas do you have for daily tasks? (I have some examples of what they’ve done for Ellie if you’re interested)
•           Ask to tour the therapy rooms to make sure the environment seems engaging and age-appropriate.
•           Will my child be working with the same OT/PT/ST throughout the year?
•           When/if my pediatrician orders additional therapy hours, how will that be handled in the school?

This is not an exhaustive list… just some ideas to get you thinking ahead of time.  I am picking the brain of a friend of mine who is a lawyer specializing in inclusive education advocacy to create a full list of things you may want to think about.  Contact me if you want a copy of that to use as you prepare for your IEP.  I do plan to post again on the benefits of an inclusive classroom.  Until then, friends, thank you for reading along and thank you for hanging in through this lengthy post.  And know - I haven't even scratched the surface on the list of ways that Shelby Hills, Wilma Valentine, and the Shelby County Board of DD has gone far above and beyond their call of duty for the families in our county.  Keep fighting the good fight.  Much love!