Dealing With Public Perceptions — 5 Minutes for Special Needs — Page 2

Dealing With Public Perceptions

How Not to Talk Behind My Back…

When Jack was first diagnosed, I was horrified. Depressed. Had major anxiety attacks. Cried for hours.

Somewhere around Jack’s second year, I felt myself changing. I no longer longed for the green field across the fence–I was OK with the patchy grass holding one perfectly beautiful flower in my own yard.

So, I started writing my feelings…part here, part at my own blog. I advocated for my son. I tried to educate Moms who were being Too Pushy on the proper way to advocate (that begins with being well educated and not screaming…professionalism always counts!). I felt like I was doing something worthwhile.

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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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The Weary Woman..

The other day, I was overcome with emotion when I read what our friend Tammy said on her blog.

(I’ll wait for you to come back…)

This is such a sensitive topic. And one that is so often overlooked. We, regardless of situation, are still human. We have bad days. We have moments when we’re SCREAMING up the stairs to tell the kids to quiet down. We suffer through How to Train Your Dragon forty bazillion times a day. We worry about how to cook dinner for 12 with 2 eggs, some week old tortillas, and a can of tomato paste.

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Wounding Words, Wondrous Words

I almost couldn’t hear it when she spoke.

Words uttered under breath, understood loud and clear.

“You’re so late,” she rolls her eyes, clicks her tongue in disapproval.

I smile anyway, pass by, walk my daughter to class.

Fifteen minutes after the bell rang, we’re entering campus.

 

The words rattle me again.

But not just the words she said, since they were true.

It’s what I made them: “What a bad mom.”

Were those her words?

Or just what I felt?

 

The morning to that point? Fury-filled.

My oldest twisted in angst, missing her sister, angry at her absence.

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Book Review: House Rules by Jodi Picoult

Most people just don’t get it right. When they write for us, about us, or to us. When it comes to others’ view of our lives in families with special needs, I’ve never seen anyone show it like it really is.*

The lack of realism, empathy (and appropriate gallows humor) is partly why I’m writing a book for special needs parents right now. It’s certainly why I’ve plowed through over 25 other titles in my research. Unbelievably, the first mainstream book I’ve found that nails what life is like as parents of a special needs child is a novelHouse Rules by Jodi Picoult (Washington Square Press, 2010).

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Romanticizing Adoption and Special Needs

It’s tough being an adoptive parent. And a parent of special needs kids.

I’m both. And today reminded me of one of the most frustrating aspects of our situation: other people romanticizing it.

Sitting on a counselor’s couch at a residential treatment facility where one of our girls has been for 6 weeks, life doesn’t look rose-colored. Discussing the need to eliminate visits because my daughter – who’s lived with me since she was 2 – can’t handle being in a family… that’s not romantic.

It doesn’t even feel unromantic. It just feels wrong, on every possible level.

So why do I feel the need to read blogs that idealize adoption?

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Thrive with Autism – Tips for Those Looking to Understand

Andrea Richardson and Andrea Warner are two teachers who want to help parents Thrive With Autism. We love these tips from www.ThrivingWithAutism.com that they are sharing; both for parents, and for the community who is trying to understand Autism.

Have you ever been in a store, movie theatre, or, yes… even an elevator, and your child has a meltdown? Did the people surrounding you look at you like you were the worst parent around? Or worse, even ask you to control your child?

This is a common situation that many parents face on a daily basis as their children are learning skills needed to manage their environment.

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What GALL !!!

gall – the trait of being rude and impertinent; inclined to take liberties in a manner that is rude and insulting

On Friday nights we routinely eat dinner at the local Chili’s restaurant. If you know the place, it is normally loud and crazy with lots of families .

Melissa and her friend Jaime get a table for themselves and Kathy and I join Jaime’s mom Randi at our own table. We always get tables close by so we can keep an eye on them. The girls order for themselves and generally have a great time chatting and playing cards. This is our way of encouraging their independence and social development.

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The Big Secret…

I’ve been thinking a lot about how being a special needs parent has changed my life. Sure, there are sleepless nights, giant messes, and financial worries. Even typical parents have those problems!

Yet, I have learned priceless lessons—some about me, some about the world.

These…are the secrets that make this journey worth it all.

1. I am strong. Stronger than I ever thought I could be. Even on the days when I feel like I can’t put one foot in front of the other, I still somehow manage to find the strength to carry on.

2. Love…is more than patient and kind.

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What I Wish…

I came across an interesting article today. And by interesting, it made me roll my eyes and sigh audibly for my husband to say “what is your problem?!” The article in question can be found here- “What I wish parents knew”: Doctors, teachers, therapists, and more weigh in. If I had opted for a longer title, it would have been “What I Wish OTHER parents, doctors, teachers and therapists knew”. I’m not an expert in these things, just a mom, trying not to screw up her 2 kids too badly, I can only afford so much therapy, you know?

The first point was- Slather on Sunscreen.

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