Laughing Through The Tears — 5 Minutes for Special Needs — Page 2

Laughing Through The Tears

When I Realized I Needed My Own IEP

Well hello there stranger! I’ve been MIA for a month and I’ve missed your posts and interactions. But as of today, I’m back, and can’t wait to catch up on some great posts here!

What have I been doing all this time? (Besides doing the happy dance upon the arrival of my new escape Kindle?)

I was apparently re-enrolled in Special Needs Parenting 101: Moving Forward Often Means Moving Backward. And it was like that dream I used to have in college – the one where I wake up in class on the day of finals and realize I didn’t attend lectures or read the book.

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Parenting and World War II Movies – The Big Realization

We’re in the trenches, people. We eat, sleep and breathe what our kids need at home. Advocate for them at school and in extracurricular activities. Read and pursue resources. Maybe even dream about them. I know I do. With two girls diagnosed with a slew of different special needs and their sisters who’s lives have acquired some secondary ones of their own, it’s truly a 24/7 life in the trenches.

Which is why escape is a welcome pastime. Personally, I love movies, mostly because I’m a closet geek and enjoy biographies and World War II films. I didn’t realize until tonight, when I picked a film to watch, that there’s probably a reason I resonate with this genre.

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Rebuilding Life – An Interview With a Pro Who “Gets” Us

You know those stories we all tell about our kids’ care team professionals who don’t have a clue? The ones who clearly don’t know at all what life is like outside their 15-minute office visit with our child and her challenges? My guest today is NOT one of those professionals! Harriet Cabelly is a Life Coach who’s also a mom of an grown child with special needs. She specializes in helping individuals and families rebuild their lives – and grow into even better ones – despite challenges they face. I’m excited to introduce her to everyone here today!

Q: Harriet, please tell us a little about you and what you do.

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I Brake for School Bells

It all started last week, and probably has some bearing on why I didn’t manage to post anything last week…just couldn’t make it happen. Somehow I had the mistaken impression that the child would be happy to return to school. We had a pretty good break (stomach flus aside) and she had asked when she would get to go to school again. GET to go. I thought that was a good sign. Uh…no.

Maybe she was just tired and still recuperating from catching her sister’s tummy bug (which extended her winter break by one day). Maybe her increasing academic struggles make her less excited to go.

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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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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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Friday Frustrations…

You know, I hate to be a whiner. It’s just not part of my chemical make up. BUT, sometimes, by the time I get drug through the week by my hair, Friday is just the most frustrating day of the week! I feel like I’ve spent all week fighting with or for something, I get to Friday, and then I have to wait 2 days for it to be Monday so I can start again!

Can you relate?

So what are you frustrated about this week? I’ll go first, then you tell me about yours in the comments, K?

1. Husbands: I love mine dearly, but so many times he thinks that nothing is a big deal or worth worrying about.

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I Went to the Dark Side…

I did it.

I went to the Dark Side.

All this time, I’ve been super vocal about the difference between being an advocate and being a…. well, you know.

Yesterday, all that changed.

(To read the whole drama, go here)

I felt bad about it all day. I felt like I had worked so hard to be well-educated (hello, Master’s Degree in Nursing anyone?) and professional, as well as always prepared and level-headed, when I spoke with Jack’s physicians. When I saw the pain and fear in my son’s eyes, and no one was doing anything about that little fact, I lost my religion and my mind in one fell swoop.

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all in a day’s work

It’s official we started back at therapies…after a year break…under protest but just the same we’re back.  Yesterday we had our first visit, Physical Therapy, as we’re in the waiting room my son’s cracking up a at door that opens shuts constantly (first thing in the morning so busy time).  He proceeds to then find the need to dirty his diaper, and it’s time for therapy to start.  I go back with him or they’d never get anything done with him.  I was excited because the room no longer had the gym mat laying on the floor but an adjustable table. 

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The Value of Life.

…”The hard part is trying to answer the questions Walker raises in my mind every time I pick him up, What is the value of a life like his — a life lived in the twilight and often in pain? What is the cost of his life to those around him? … If Walker is so insubstantial, why does he feel so important? What is he trying to show me?”

-excerpt from Ian Brown’s Memoir “ The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son“

It was this passage of the book  The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son that first stopped me.

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