Raising Awareness — 5 Minutes for Special Needs

Raising Awareness



                               

Happy November, Friends!

(How did this happen? Wasn’t it just January?)

The past few months have been sort of rough for us. For some reason, it seems like everything we’ve done, or tried to do, went horribly wrong. When things don’t go the way I envision them, I tend to get–shall we say–moody? Maybe not moody, but it makes me upset, because I am such a perfectionist (character flaw) that I want everything to go just the right way!

Boom. It hit me.

That is how it is to be our children. I’m sure that, somewhere in their bodies, they think “I want things to go right…for once!”

We focus so much on how to make the world better for them…and I think we sometimes forget to acknowledge the difficulty and emotions they must conquer daily. Some kids can’t verbalize this. I understand that. But maybe sometimes, a scream, or a bite, or a meltdown is just their way of saying, “Dang it! I need to be grumpy! This is not the way it should go!”

So, I’m vowing to change my attitude.

I’m going to spend this month–the month of Giving Thanks–to do just that. I want to be aware of the things that I am truly grateful for.

Today, I’m grateful for:

* A husband that puts up with me no matter what.

* Children who are not embarrassed to have the mom who wears pajamas to go to car line!

* Family who sends casseroles on rough days.

* Florida—where I can complain if it dips below 70 degrees!

* Our country–the place where we get to vote, we get to practice our chosen religion, and we get to see the human spirit soar through adversity.

What are you thankful for? (I’m thankful for YOU too!)



                               

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Antibiotics: How Do YOU Roll?

My Sick Little Man

Need a little help here, PLEASE: My Big Little Man (who is smaller by 5 lbs now than My Little Man) got that back-to-school cold going around. For us, that means an imminent sinus infection as his compressed sinus cavities — a trait common to those with Down syndrome — makes him prone to this particular affliction. In addition, he’s inherited my lousy sinuses, which I got from my mom, so he’s got a double whammy! This is his thing!

So there I was at my VERY trusted Doc on Tuesday for a preemptive visit. My Big Little Man was already congested to the point of no in- or out-going passage in either nostril — read: no drip, no air… just STUCK.

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Being the Parent

I sat in the developmental psychologist’s waiting room just simply observing the behavior of the parents. Some were busy filling out paperwork, one was reading a book, another was totally in to playing Angry Birds. Not a single one was watching their child.

I watched these children, who were obviously there for a reason, as they screamed, hit one another, and ransacked the poor bookshelves—while the parents were oblivious. You know, because Angry Birds is more important…

One mother (the one filling out paperwork) finally looked at me, who was staring at the child who had a hold of another child’s ponytail, and said, “You know, I try hard.”

I gave her a nod and a smile and continued reading to Jack to keep him calm.

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Leaps and Bounds in Baby Steps

The Boys are swimming underwater like frogmen. Doing underwater headstands, flips and dive-toy retrieval as well as sporting an admirable breast stroke… though they clearly prefer being UNDER the water versus on its surface. (They get that from Mom and Dad being SCUBA divers, I guess.)  The Boys are competent dead-man floaters (face down in the water, breath-holding). But that won’t help them pass the Red Cross Level 2 swim test OR, more importantly, stay afloat if they suddenly find themselves in water over their heads. They’re confident but careful in the pool; Big Little Fishes improving daily. Two days ago, their “typically-developing” friend Nick showed them how HE can float on his back in our pool.

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Give ‘Em More Credit… BELIEVE!

You and I know, but does everyone else know? Our kids are smarter than we think. So much smarter than even we give them credit for. WAY smarter than what it says on their report card. And, smarter than any test can possibly measure. I know this… I KNOW IT! And, you know it too!

Graduating Kindergarten: The Big Little Man with the Principal, his gen-ed teacher, the classroom aide and his 2:1 aide.

I just wish everyone else — especially their teachers and the CSE administrators and the critical strangers that we sporadically run into who judge them so harshly — knew it in the same way.

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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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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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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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