inspiration

It's Sucker Punch Season for Special Needs Families

Graduation and awards ceremonies give the Right Hook. Yearbook signings throw a left jab. Prom pictures deliver an upper cut.

Sucker punches are those moments we think we are fine, but BAM out of nowhere something hits a tender place we did not know existed.

Autism Awareness, Pet Ferrets, and Peanut Butter

Apparently, it is Autism Awareness Day and, well, I was not aware until it started popping up everywhere. I suppose it's cool this day exists. I did my research and learned it is also national peanut butter and jelly day and also national ferret day. So, yea. I'm not quite sure what we are supposed to do with all of these days but it seems perhaps I can do my part on this national day to help you become more aware of this autism thing.

A Mom's Humbling Advocacy Lesson

"Imagine if someone saw potential in our children and raised the standards to such a level even we had to be convinced. Imagine if someone had so much experience and success that his/her confidence in our children’s ability made us believe in something bigger. Imagine if this someone would not back down until higher standards were not the end goal, but the starting line."

I Don't Want Back-to-School Advice for My Special Needs Child

"Please, for the love of all things special needs parenting, do not give me a to do list right out of the gates as the school year begins. Unless it involves a nap or Bloody Mary at 10:00, I am not interested. 

Just give me a week to recover. I will be all over the to do lists in a few weeks. 
I promise."

The 13th Hour: A (horrible) Road Trip

"Around hour 10 into the drive, Miranda started into a screaming and thrashing fit. It was intense. Around hour 11, I started having horrible thoughts. Thoughts like if Miranda was not my daughter and I didn’t have to live with all she brought I would be just fine with that. Thoughts like I wished our family could just have all “normal” kids. Thoughts like had I known what I was signing up for I would not have had her.

Yes, those kinds of thoughts,"

 

An Oscar Winning Script

"As I was hopping between Theatre #1 and #2, I couldn’t help think about the differing abilities of the children presenting in Theatre #1 to those performing in Theatre #2. One set of abilities has the potential to advance the world with technology, and given their Silicon Valley roots, they probably will. 

The other set of abilities has the power to bring a room full of people to their feet while filling hearts with warmth and filling eyes with tears."

Praising God for Random Squirrels

"There are times my heart longs to deeply connect with God via prayer. The intentions are good but the follow through stinks.

As I can tell, two issues hinder carved out prayer time. Somehow they are complete opposites which probably indicates a wide range of issues. They are:

  1. Falling asleep - I’m talking about zoning out within 2 minutes. “God thank you for today and the.....gift of sleep.” 
  2. Distraction - All it takes is the buzzer to go off in the laundry room or a squirrel jumping on the fence. “Squirrel!”  

Rarely do I make it to “amen” when doing one of those quietly sit here and pray kind of prayers."

Wounded by Prayer & Healed with Cake

Prayer has been like a wound I prefer to cover with a clean bandage.

Can I just keep prayer nice and neat? Can I just occasionally peak under the bandage to see if anything is changing? Can I just claim “Amen! Answered prayer!” when things are healing and “God has a plan!” when it’s still a mess? 

For about a decade, I kept prayers in a safe spot under the bandage. I had to. There was a deep wound from unanswered prayer...

Foggy Brained Ideas from a Tired Caregiver

Sleep deprivation is part of the parenting gig. New moms are easy to spot with their top knots and coffee tumblers. A safe bet is the top knot, make up free, coffee tumbler toting woman you see has not slept in weeks. She is wiped out. 

Lack of sleep does all sorts of wacky stuff to the body. Short term effects include cognitive impairment, inability to concentrate, drowsiness, and top knot hairdos. These side effects explain why early phases of parenthood are a blur. 

For caretakers of an individual with disabilities, seasons of sleep deprivation can extend well past a decade. My daughter did not sleep consistently until puberty. 

Hard to Hear Special Needs Advice No One is Telling You

This is tough to discuss without coming across cold and insensitive. Special needs parenting is no joke. There is exhaustion, heartbreak, and ample opportunities for worry. We will cry. We will need to be picked up.

With the above reality comes a slippery slope of spending too much time in these areas. I thank God for people who did not allow me to linger and risk the chance of a downward spiral...

Why Caregivers Are Lucky In Love

Long term caregivers are incredibly fortunate. We have continuous opportunities to grow in capacity to love. We have a second, a third, a hundredth chance to get it right.

Loving perfectly is more complicated than what is depicted on a bumper sticker or groovy 60’s song. Rather, it is a slow process that does not come easy. The biblical definition of love from 1 Corinthians 13:4-8 has countless opportunities to hold a mirror up to our hearts and remind us where we are growing and where there is room for God to be invited in...

What about me?

Recently, you read stories of a Midwest Tribe of friends who were part of a winter survival strategy. They sounded amazing, right? 

When we moved to California I knew I would miss my friends, but assumed establishing a West Coast Tribe would happen easily. 

The assumption was finding folks to settle into doing life with its mess, mistakes, and bad choices would arrive with the furniture truck.

Wrong...

Five Winter Survival Strategies

Stocking up on bread, wine, and toilet paper are legit snow needs in the Midwest. Dangerously low temperatures close schools because pipes freeze, buses can’t start, and kids stick tongues on flag poles. 

Remember the polar vortex of 2014?  Anyone? It was so cold people complained the air hurt their face. 

The journey with our special needs loved ones will occasionally take us through seasons of winter. Maybe “winter” is no sleep, advocacy, hospital stays, or all of the above.

 

Keeping Cool in the Carpool

My special needs daughter was the cause of many disrupted car pool drop offs when she was in grade school. When she did not want to comply, she did what was coined as “the plop”.  The plop consisted of all 90 pounds of a 10 year old girl completely limp on the ground.

We had occasions where she would plop in the middle of the crosswalk.  

I kid you not.  She would plop smack in the middle of the street. 

50 Shades of Gray Done God's Way

I am falling in love with the color gray. 

Strange.

For over a decade yellow has been my everything.  This past summer when we painted the house, I campaigned for yellow siding and a bright door to match.  It was an unsuccessful campaign, but the effort was fierce and yielded a fabulous turquoise door.

So the whole gray thing is taking me by surprise. 

I mean….gray?  Really?

Doesn’t the color wheel put yellow and gray as opposites? 

Actually, is gray even on a color wheel?  Isn’t it so drab and sad that it’s not even called a hue, tint, or shade? 

??Happy?? Birthday

I am not a fan of birthdays. 

I am at the age where I forget how old I am and have to do math.  Okay…born in 1972…2016 minus 1972….   Anyone else?  I know there are more of you out there.

However, It’s not my own birthday that is hard.

The birthdays with a history of stirring less than celebratory feelings are those of my special needs daughter.  The cake and balloons may as well be a countdown timer ticking entirely too loud...

Just Get Over It

I can be a really crappy friend. 

I blame it on 20 years of coaching high-level gymnasts. 25+ hours a week spent with “my girls” where I was paid to point out flaws and demand correction. The expectation being issues were to be taken care of regardless of fear, mood, health, environment, or whatever. 

No excuses.  !NO DRAMA!

Just fix it so you can move on and be better.  

While this made me one heck of a successful coach (if performance is the litmus test), it also has made me a crappy friend to others and to myself...