Cerebral Palsy — 5 Minutes for Special Needs — Page 2

Cerebral Palsy

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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As They Grow…

I am the first to admit that March 7, 2007, was one of the toughest days of my life. I sat, holding the baby that only a week prior was declared “mine” in a court of law, while a neurologist told me my son had a diagnosis that changed his life forever.

I felt numb. I felt like I couldn’t breathe. I felt alone.

I bought chocolate. I bought wine.

I had to tell my mom…my best friend…my daughter.

All those years ago, I was sure that getting over the grief and desperation, and finding the point where I felt that I was educated enough to be an advocate was a huge achievement.

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Special Schools

This week has been one of those weeks where my emotions have gone from elation to fear to peace—and then back again!

It is time for Jack to head to school. In the past, I was determined that the only way he was going to do school was with me by his side (meaning: home school). I am, however, beginning to understand that there needs to be a break between my son and I.

His power (both physical and emotional) is getting stronger…

 

So, I looked in to schools. The public school near us would be OK, but he would be labeled as “Other Health Impaired” and a list of other things…meaning he would only hang out with the other kids for recess (which he can’t really do much of) and PE (same thing).

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Weddings (and other such events)

Tomorrow my brother is getting married.

In a quiet, small gathering.

On a boat.

At Disney World.

 

Now, while most people think this sounds romantic and lovely, I am a nervous wreck. My brother loves my son no matter what; however, if he decides to melt down or scream or narrate the entire event, I fear he’ll never speak to me again!

So, to make myself feel better, I tried to think of all the ‘What If’ moments that could happen, so that when something minor happens, I won’t freak out. It doesn’t make any sense to anyone but me, but that is OK.

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It’s POTTY TIME!!!!

A few years ago, I fell in love with Signing Time. Jack was struggling to do much more than scream and I was increasingly frustrated. In a last ditch effort, I bought some DVDs and prayed that he would communicate with me. Slowly, he began to sign (things like more and done) and I felt like maybe I could communicate with him.

That’s when I decided that I was going to stalk Rachel Coleman (co-Founder and general all-around awesome human being). I followed her on Twitter and began to join the weekly Signing Time chat (sadly, they’re no longer doing it–because it was SUPER fun!).

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Message for ALL Mom’s.. LOVE your kids, as if they were dying..

My day had started like any other, I was up at 5 packing lunches and backpacks, while trying to gulp down some coffee. I had an appointment at the office later, so I spent a few minutes standing in front of my closet perplexed and sighing. I looked in the mirror, briefly noting the major damage 40 plus years and nightly interrupted sleep can bring.  Finally, by 7 am, we were all dressed and ready, so we hit the road to drop Zoe’s big sister O, at her school first.

Later, it was just Zoe and I in the car. The sun was streaming through the car windows, the radio was on and I was trying to make Zoe laugh.. 

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The Little Things

(The moving truck arrived so there are currently giant men and 497 boxes all over my house. Jack is in a corner screaming, and the dog peed on the floor. Such is life, eh?

Needless to say, I’m reposting again. I PROMISE to write new stuff next week–you know, when I can feel my legs again (who knew moving would work so many muscles?!). Until then…)

 

 

 

 

This week has been super stressful, for multiple reasons. There have been appointments, life-altering conversations, and…it’s my first week of summer semester (so I had to teach and act professional after getting sorta icky news).

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