Advocacy — 5 Minutes for Special Needs — Page 2

Advocacy

Perfectly Imperfect

That’s what I am.

 

I don’t know about you, but sometimes I get bone tired. Tired beyond tired. Tired to the point where all I crave is sleep, and yet  it eludes me.

It is in these moments of sheer exhaustion that I sometimes have the most clarity. It makes no sense to me, but hey…

I don’t want to be the Best Mother on the Face of the Earth. I want to be the best mother to my kids. I will fight for their education, make sure they are clean and fed, and love them to bits and pieces.

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Jack met with the developmental psychologist on Tuesday for a few hours. We have been noticing some hard-core aggression along with some other really disturbing “new habits” that have come up in the past few months (for example, he’s taken to not sleeping again, and he’s picked all the nails off his fingers and toes). It was time.

She is amazing.

The office is amazing.

They have an education advocate who comes in to introduce herself and she calls you to make sure you’re getting everything you should from the county (school wise). I nearly wept with joy.

After two hours of pouring our hearts out and her seeing Jack at his absolute worst, I felt like we were actually in the right place, with the right provider for Jack.

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Be Prepared….

Living in Florida, I know a bit about natural disasters. Like when, in 2005, 3 hurricanes hit us in 6 weeks. I got a new roof twice.

Back then, I only had the Girl Child, who was 5. She was self-sufficient, opinionated, and stubborn–but she knew when Momma said, “Get in the bathroom and cover up with a mattress, ” I meant business!

Fast forward to now. Jack is part of us. He requires extra preparation and forethought.

Did you know…that there are a TON of states that could, at any time, be hit by a hurricane? Did you know that September is the month when hurricanes most likely occur?

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Fatherhood, redefined…

My life changed drastically the day we adopted Jack. I just didn’t know how much it was changed.

We struggled to have our oldest child. She was born early, but healthy. Shortly after her birth, I had a large lump removed from my breast. 2 months after that, I had a complete hysterectomy. We knew we would never have another biological child, and we weren’t even sure we wanted to adopt at that point.

However, when J turned 5, she started questioning us about babies and why she couldn’t have a sibling. Our hearts began to change, and by the time J was 6 and a half, we had prayed enough, thought enough, and felt strongly enough to complete a home study and begin the adoption process.

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Moms Gone Mad!

I have tried…

When Jack was taking therapy a million hours a week, I would sit in the waiting room and take in the “sights” and sounds around me (seriously, people, leggings are NOT pants!). So many times my heart broke when I would hear another parent, under the guise of “advocacy,” just pick apart either physicians, nurses, or therapists. Perhaps some of this is because I am a nurse (BSN, RN–MSN 2013)? Perhaps some of it is because I am careful about what I say about other people?

When I was teaching nursing assistants at my last job, I would explain to them that they did not need to enter the field and tell other nursing assistants what was wrong in that specific facility.

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Special Needs Sports

When Jack was first diagnosed, and we still felt like the world was ending, my husband was devastated. Not because of the diagnosis, but because of what Jack may not ever be able to do—play football, or baseball, or any of those “guy” things. Personally, I believe that deep down, there’s this innate thing that guys have–I think they daydream of dirt and sweat and the smell of sweaty socks.

Last week, I discovered that my local (well, it’s not in my town, but the next town over) recreation department has special needs sports–dancing, cheerleading, swimming, and baseball.

My heart nearly stopped dead.

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What a Special Needs Mom wants for Mother’s Day

This week, I’ve read lots of blog posts and memes about Mother’s Day. Some of them are pretty dead on accurate, and others hurt my heart. Lots of them are about what mother’s really want for Mother’s Day—things like for children to close the doors, pick up socks, and so on.

So as I was sitting here pondering how superficial many of these things were, I started to think about what I would want for Mother’s Day.

(Now, everyone will know my secrets)

  1. Health care perks! While I’m lucky enough to have a fairly good rapport with our doctors and specialists, I’d really like to have a punch card.
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How to Save a Life

“And I would have stayed up with you all night…” (The Fray)

Funny…my nights are filled with constant coughing.

Wet washcloths to the forehead.

Pulse oximetry.

Puking of mucus.

Pedialyte.

Medication.

Pillows.

 

 

My little dude is not doing so hot.

His lungs aren’t doing their job very well.

There’s Lysol, medications, inhalers, nebulizers, steroids, antibiotics… and yet, it’s not all working too well.

When you read this, I am not sure if we’ll be home or at the hospital.

I don’t want to be at the hospital… it scares me.

I don’t want him to go in with one thing and contract something else.

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The Beauty in the Beast

We, lovingly, call Jack “The Beast” sometimes. We don’t mean it in a derogatory way at all. Just in a way that we all know is true— he’s kinda Beastly (he’s a growler…loves to growl all the time when we’re out. Growls at old ladies, at kids, at dogs…). Sometimes he’s “Beastly” or “My Beasty Boy”… you get the picture.

You see, I can see the Beauty in My Beast.

You see a kid that growls and is grumpy.  I see a kid who growls because he’s sick of people staring at him, and who hasn’t slept more than 4 hours a night in his life.

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Faith and Hope and Love.

The thing about faith is that…it’s not transient. You either have it or you don’t. You don’t have to believe in the God I believe in to have faith either. You can have faith in lots of things–doctors, teachers, friends.

To have faith, you have to trust. A lot. Believe. A lot.

So where does that leave us, as special needs parents? We deal with so many things on a daily basis. We put our faith in things we can’t see–the future, IEP goals, health care reform (heh).

There’s no magical devotion or book or lesson that speaks to my situation.

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