GI — 5 Minutes for Special Needs

GI



                               

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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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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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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On Validation…

So, we are finally settling in and making life work.

Part of that means we had to get all Jack’s records and get them transferred to new physician’s here. That was a ton of fun. (rollllllls eyes)

However, the most interesting thing happened.

We took Jack to his new GI on Friday and she…

listened.

asked questions.

didn’t suggest we shove food down his throat.

validated our feelings.

Did you catch that? She validated what we have been doing/thinking/feeling for FIVE years! She told us we were right to fight with the other GI.

Why does it have to be this way?

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Holiday Carols Were Not Written for Us

I have to tell you, I am a huge sucker for holiday music. I love hearing it while I shop in the grocery and when I’m in the car. I dream of falling snow flakes and cozy fires. I actually know all the verses of many traditional hymns and get mad when artists don’t sing them!

Then, the other night (after a particularly difficult night with the boy child) I started to think about the words, and realized that no one thought of the Special Needs Family when they wrote Christmas music.

1. Silent Night–Right. Like that’s ever gonna happen!

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