Adoption — 5 Minutes for Special Needs

Adoption



                               

Hi you guys!

This is basically my week again…only different surgery on the stomach…I’ll update you later…

 

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I get tired–the kind of tired that makes your bones ache.

Sometimes, I get grumpy too.

Hey, don’t we all?

In this ever-winding road of special needs parenting, I find myself often in a place of worry—of frustration.

Nothing seems to go right. Ever.

If there were 2 possibilities–say, vanilla or chocolate–Jack would somehow end up being banana. Even if there was no possible, plausible way for that to happen, it would.

So, you would think that I would be surprised when weirdness happens. I’m not. Not anymore.

I think I’ve begun having out of body experiences. Really. It’s like, I hear what people are saying and I’m standing there looking at myself shake my head and smile, while inwardly, all I really want to do is curl up in bed and cry.

 

My Mother: “What is going to happen? Who will keep Big Child? Shall I bring a casserole?”

My best friend: “What is this kid going to do NEXT?”

My husband: “I probably have to work, so…”

 

 

Jack’s stoma ate his feeding tube. Literally. As in, he is having surgery to remove his feeding tube because no one can get it out manually.

I’m not freaking out. I figure, it is what it is. My child is unique. Very unique.

I get asked all the time…”How do you do it?”

I’m telling you…out of body experience is the way to go. But you can’t tell non-special needs parents that without them wanting to have you committed. My answer is usually the same to everyone—I do what I have to do. You take your kid to soccer and to playdates…I take mine to doctors offices and surgery.

What do you do to relieve stress? How do you manage when the chips are down?

(as I write, I have a cup of coffee, 3 Hershey kisses, and I am really contemplating going to the store for gelato!)



                               

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Testing….

Hi there! Remember me?

(don’t answer that…I’m beginning to feel a foreigner in my own land!)

 

So, here’s the current score. School District: 5, Jack: 3.

It’s looking rough out there.

His IEP was completed a few weeks ago. Because he turned 6, he has to be “transitioned” from the developmental delay label to something else. So you know what that means?

Testing.

Lots, and Lots, And LOTS of testing.

We’ve had 3 speech tests, an intelligence test, and today we’re going to the psychologist to have another battery of tests. Add to it physical and occupational therapy evaluations, and you have…

One.

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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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Hospital Homebound

School.

It’s happening around here. Some of the counties near where we live have already returned to recess, brown bag lunch, and smiling teachers. We…start Monday.

Well, my daughter starts Monday. My friend’s children start Monday.

Jack. Not so much.

See, we qualified for Hospital Homebound (HH). Basically, this is a school within a school. It has its own principal, teachers, guidance counselors, etc. Three times a week a teacher comes to my house and hangs out with Jack. Speech therapy and Physical therapy will visit him at home as well. However, it’s under the confines of the MotherSchool, which is the elementary that we are zoned for.

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The Bubble Bursts…

Sometimes, I lose my words.

Like someone popped my beautiful bubble that I worked so hard to get right.

Or I feel like the sky is closing in on me.

Actually, I feel like I’m the kid with the black cloud that only rains on me.

(Pity party, table for 1?)

So many times, on this journey, I have these huge highs….that are followed by the lowest lows. I fight hard, I play hard, I love hard…and then I get kicked in the teeth.

 

YAY: the insurance approved the wheelchair!

BOO: they’re not sure when we can actually have it (4-12 weeks is the estimate).

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Labels

 

 

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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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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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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