Me Time

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February 4, 2013 | Published in Advocacy, Autism Spectrum, Cerebral Palsy, Day In And Day Out, Dealing With Public Perceptions, Developmentally Delayed, Down Syndrome, Epilepsy, Laughing Through The Tears, Me Time, Resources, Sensory Processing Dysfunction

Now She Knows She’s Different

by Suzanne

When Zoe was little I spent a lot of time thinking ( and writing) about about how different she was. Then she grew, and through her grade school years blossomed with the encouragement to try and do her best as I made sure she was always included, and treated just like everyone else.

Zoe will be starting sixth grade next year, and growing into who she is meant to be. She is quick to laugh and smile, full of pre-teen sass.

I have always maintained my own set of rules for Mothering Zoe. Many of them involve not making a big deal about her disabilities, within our family .. even in small ways. [click to continue]

Tagged as: Special Needs Mom

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How to Hold it Together When the World Falls Apart

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.

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The Chicken

Life sucks sometimes, right?

Yeah.

In the past few weeks, lots of heavy stuff has been going on (in my world and in the world at large). We’re still having testing done on Jack for school. My daughter is hormonal and vacilates from angel to devil in mere moments. I’m struggling to muddle through my final classes while taking care of Jack’s needs, my family’s needs, and still act as taxi driver, head chef, and laundress. If I see one more political ad, I might break the television.

So, I snapped.

(Do you know the story of Beyonce the Chicken?

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It’s the Little Things

My girls are suddenly into having pretty fingernails. They want me to use nail polish and make their fingers “fancy.” The four year old is particularly hooked on anything fancy and, in spite of her tomboy spirit the eight year old wants anything her sister gets – especially Mom’s undivided attention as I apply the polish.

Now when was the last time I took the time to make myself fancy? Let’s see…

I haven’t had a haircut in over a year.
Showers are still a rare and special treat.
Last time I had a real pedicure was almost two years ago.

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Mom Hair

I am, not by a long shot, a fashion maven. Most days, I rock the t-shirt and jeans look.Some days, I’m lucky if I get to wash my face (showering is clearly not happening on a daily basis!).

Up until recently, I haven’t cared how I look (seriously, I tried to water down mascara that expired in 2006). I’ve spent 5 years dragging a little boy to and fro, over the river, up hill both ways. I’m tired. I’m worn out. I’m weary. I’ll admit that freely, although it took me a long time to be “ok” with myself for saying such things.

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Don’t Forget An Important Part of Your “Thankful For” List

A Day to remember why you’re thankful. What you’re thankful for.

Thankful for partners, the few (or more) supporters that surround you, jobs / careers, friends, insurance, making it this far in your journey. This year, this time, I encourage you to reach within, look within – to you. Inward to your strength, your drive and determination.

This year, I hope you’ll take a moment to acknowledge yourself, acknowledge that you are a very large piece of your child’s puzzle…and you are someone to be thankful for.

Happy Thanksgiving!

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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 novel – House Rules by Jodi Picoult (Washington Square Press, 2010).

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Overcoming Compassion Fatigue In Your Family

There’s a new diagnosis on the block. This time, it’s for us – the parents.

A few months ago, I wrote about a must-watch stress documentary for special needs parents. Yesterday, while visiting my daughter at her residential treatment facility, I discovered a term that explains what we face even better than stress.

Compassion fatigue.

You know all that time we spend listening, lifting, caring, watching, hoping, helping, worrying, planning, advocating and giving? It has a price. Emotional fatigue, depression, weight gain/loss, irritability, forgetfulness, resentment, physical pain, and many other stress-based symptoms. Beyond that, however, is the effect it has on families.

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A Vacation From Special Needs

Today I’m driving to my mom’s for a week of swimming, museums, movies and play time.

This time will be different, though. This time I left “special needs” off my packing list. After laboring over the decision for weeks, my husband gently urged me to choose rest on this vacation. Which means that yesterday, I took my 8 year old to a residential respite home where she will stay while we’re gone. There’s no relief yet – only disorientation and a sense of guilt. After all, she only hit people a couple of times. She only peed on the floor twice last week.

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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?”