Have you heard my story about Autism?

Another blog I follow, Welcome to StimCity, asked yesterday 'What is your Autism?' I saw the question when it first posted but didn't have time to comment. Today I read through some of the many beautiful words written and realized I needed to share as well. For each of us affected by Autism it means something different. This is what it means to me.

My Autism is...
Trusting that God has a plan for my boys that I can't yet see.

Being daily amazed at how far they've come, realizing that it's because of our combined strength, and knowing that I've been given a great gift to have them as my children.

Struggling to contain my emotions at school meetings, doctor visits, church activity, family gatherings or anywhere else where they may be judged as different. Avoiding taking them shopping because it's too hard for me to remember what I'm there for and still keep my boys from falling apart. Creating great adventures at home where we are 'safe' from the outside world.

Wishing I had more than 2 hands so I could hold their hands and rub their back at the same time. Finding new ways to make my little guy feel snuggled... without actually touching him. Wishing I had more time and energy to make all their food from scratch to avoid the dozens of allergies they each have. Making at least two, and often three, meals for every meal for my family of six because no one can/will eat the same things.

Having an extensive knowledge of all things Nintendo, Pokemon, Star Wars, Super Heroes, and Thomas the Tank Engine... because occassionally it can earn you extra 'Cool Mom' points or be the only thing that saves me from a public meltdown.

Going to school meetings, not just for my boys but for my friends' children, and fighting for changes in our local school districts. Being quick to call in the media when any child is treated unfairly. Fighting for teachers to attend our annual Autism Conference. Figting for a resource center to help families receive diagnostics and therapy. Creating a website for our support group that has information useful to families on a national level. www.aswtcc.org Printing piles of information to share with the pediatrician who's only reference for Asperger's was a paragraph at a conference six years ago.

Adjusting my work schedule as a bridal boutique owner to manage 5 trips to 3 schools per day to transfer my own and friends' children to and from. Making myself available to offer respite to other families as often as possible although I rarely receive any myself. Homeschooling part time because middle school is rough without being afraid of public restrooms, easily confused in crowds, fear of busy places.

Trying to explain to my mother why having my boys visit for a week or even two is more complicated than just getting them there, why I have to create a menu for her, why my youngest may become violently ill the night before the trip. Because that is his current pattern, how he avoided 4 field trips over the last three months. How her living at the top of a mountain away from the city doesn't mean it's safer for him. How she can NEVER let him out of her site. How eleven really means six, and how sixteen just recently meant older than ten with the possibility of fourteen.

Convincing my father that one on one swim lessons are the ONLY option because my son nearly drowned three times last attempt, and I was the one to pull him out each time. Convincing him that having the summers off is a good thing, lets my boys decompress, is the only way we can have a good start to the next school year. That not every boy needs to be an Eagle Scout.

Being the 'Mama Bear' more often than I wish I needed to, but being grateful that my oldest is finally coming into his own and not needing my defenses so much anymore. Grateful that he blends in at school now, that he is a defender for his friends that still struggle, that I know he will be okay living on his own soon.

Not sleeping more than four hours per night, because I can hear them tossing or getting up multiple times or the coughing tics that never quiet. Because I worry.

Having amazing people blessing my life with their support, their knowledge, their strength. Knowing that without them I wouldn't have known, wouldn't have learned so much, wouldn't make it through the hard days.

Learning a new language, a vocabulary of acronyms, therapy techniques to use at home because we will never quite qualify for anything official. Knowing that no one ever just has Autism, that there is a myriad of other diagnostic terms and languages to go along with it. Becoming friendly with the words tic, stim, squeeze, flap, OCD, ADD, anxiety, panic disorder, etc. Knowing that the doctor who diagnosed my son with oppositional defiance and told my husband and I we need parenting classes had obviously not read anything his teachers had written about how helpful and sweet he is. That just because the doctor said it doesn't make it true, it's all just based on opinions and an hour with my child does not make you an expert. It's okay to fight back, to trust your gut. Most times moms are right.

Quoting laws at IEP meetings. Having a list of resources at my fingertips to help the mom of a newly diagnosed child. Maintaining my composure as we talk, as I relive her moment of realization. Making an army of friends around the world I would never have known otherwise.

Losing my spontaneity, having to plan ahead for the smallest change or adventure. Knowing the fine balance between giving this child enough warning and that child too much. Refusing to give up my sense of humor, always being the one to see the silver lining. Making music and funny business a part of our routine, making change a part of our routine. Accepting that it's okay, even better, to be different.

Loving all my children for their uniqueness, celebrating every achievement, hugging them every chance I can. Knowing it will be okay, that I've been blessed to be their mom.

Have you heard the story about my sister Alicia?

My little sister Alicia's birthday was last week putting her at the front of my thoughts until I had to put in words all that's been swirling in my mind. She would have been twenty six years old but instead, due to uncooperative organs, she never saw her second birthday.

I've often struggled with how to reference her, especially in situations where people have known my family for a long time but have never known of her. Counting Alicia I have five sisters. I feel sorry for those who never got to know her.

A friend recently shared this story which was so incredibly painful for me to read. It's the story of a little boy who had a near death experience and met the sister his parents had miscarried before his birth.

This story has stirred up memories and reminded me that my little sis is never far away.


A Sister’s Song

Has it really been so long since I held you in my arms?
The years of agony and grief at not protecting you from harm.
In my childish unknowing I blamed myself for so long,
How could I understand at such an age it was God’s plan to bring you home.

Hallelujah, for His plan
To join families forever, offer mercy to each man.
Hallelujah, for His word
To share forgiveness with his people.
Offer praises to the Lord.

I can see you just as clearly as if you were standing next to me.
The beautiful young woman I knew you’d grow to be.
With Marcia’s long dark curls and Mary’s big blue eyes,
Angie’s freckles and ambition and Drew’s mischievous smile.
I see Mom’s grace, Evan’s chuckle, and Dad’s quiet reserve,
And I like to think in Heaven you and I once sang a verse

Of
Hallelujah, for His plan
To join families forever, offer mercy to each man.
Hallelujah, for His word
To share forgiveness with his people.
Offer praises to the Lord.

Although they don’t remember, I know you hugged our brothers
Before sending them off into this world.
And I’m sure I’ve heard your giggles playing with my little girl.
I bet you’re spending time with grandpa, so quick to join you there,
The two of you in Heaven must make quite an entertaining pair.

Someday I know we’ll meet again,
I hope I don’t disappoint you before then.
I’ll try to live in such a way
That you’ll be proud of my example every day.
Until we meet again I’ll sing

Hallelujah, for His plan
To join families forever, offer mercy to each man.
Hallelujah, for His word
To share forgiveness with his people.
Offer praises to the Lord.
~Michelle

Have you heard the story about April?

I love Spring. The flowers blooming, the sun returning, thunderstorms and new beginnings. April is especially important to me.
Today is mine and my husband's 17th anniversary. Seventeen years of ups and downs, drama and adventure. Eleven moves, eleven years with the Navy, four kids, four surgeries, and inumerable laughs. I'll come back to the anniversary bit in a moment...
Our oldest son was born at the beginning of April, turning sixteen this year. There's nothing like having a teenager to make you feel old, haha.
For the second year in a row, we spent Easter weekend at my sister's home in Idaho. Ten adults, fifteen kids, and surprisingly little craziness!
This April was filled with a few other exciting (and hopefully less annual) events such as Geoff breaking his nose and my purchasing the bridal store I've been working at. Both are changes that will leave a noticeable mark on our lives and hopefully improve our character a bit.

April is also Autism Awareness month. In the past few years that has meant more focused participation on local events to help promote awareness in our community. This year I've just been too busy to contribute as much as I'd like and quite frankly my kids are doing so well that I sometimes feel guilty attending free things with my 'normal' looking kiddos. I have been uplifted and inspired by many friends, both local and abroad, but have stayed carefully inside my bubble of content this month. Today, however, kicked my butt and reminded me that no matter how much I want to pretend the Autism is always there.
Our plans for the day included my spending a few hours at work while hubby and the kids spent time with friends at the park. We had hoped to make it to an Autism event but weren't able to squeeze it in before a birthday party for another friend at Chuck E. Cheese. I should have seen the warning signs as I watched Spencer play with his buddies, but I did a great job of ignoring them instead. He had wandered from the group, unaware of where anyone else was, and was gnawing on his tongue... something I hadn't seen him do until this week. Alex used to do it all the time. Once the party was finished Spencer started on a vocal loop of requesting to go home with his friend over, and over, and over, and over. Thank goodness the other mom was an understanding smooth talker and was able to assist in redirecting his request.
Two hours later the kids were fed and Doug and I were getting ready to go out for the evening, for wat is usually our one and only annual attempt at a date night. Then Spencer stumbled to the living room and dropped into my lap. My little man isn't so little anymore... At almost eleven he's not a big fan of mom's hugs so it was a rare thing indeed for me to have him snuggled in my arms for over an hour. He hurt but could only respond with 'I don't know' for most of the evening. After a lot of snuggling and blocking out the world he seems to be okay again but we are spending yet another anniversary at home.

The following is a quote I've borrowed from another Autism mom that seems to fit perfectly this last day of Autism Awareness month:
'Wouldn’t it just be lovely if after Autism Awareness Month was over we all got one day – just one, single solitary day when we didn’t have to be AWARE of autism? Just one, God. Please. For my friends. For their kids. Just one. Amen.'
~ A Diary of a Mom

Have you heard the story about the Armchair Activist?

I'm not sure what triggered it, but the phrase Armchair Activist has been buzzing in my head all weekend. Maybe it's our current political unrest. Every other news story seems to be about another politician making a major gaffe or attempting to enact an insane law... and then the commentary begins. There is such division in opinion betweent the population when for the most part (if you listen close enough) we're all really asking for the same thing.

I am a listener. I love a good story, I love hearing how someone made it through a challenge and how that has changed them.
What really gets to me though are the intensity of comments from what I consider Armchair Activist- a lot of talk and no action.

If you have survived or accomplished any of the following, pull up a chair and spin me a yarn. I want to know YOUR opinion of how and why things need to change.

If you (or your spouse) have ever...
1) staged or participated in any type of protest or rally.
2) attended and or spoken at a city council or town hall meeting.
3) chosen as a career or volunteered as a firefighter, police officer, or EMT.
4) chosen a career as a teacher or volunteered on a regular basis at your local school.
5) been part of a PTA, volunteered at an animal shelter, worked in a nursing home, donated blood regularly, or worked with such groups as United Way or Habitat for Humanity.
6) owned or managed a small business and navigated the complicated tax and employment laws.
7) served in any branch of the miltary.
8) been employed by or volunteered to work for the government.
9) run for and/or served in any government office.
10) fought for better treatment of a family member's injury or illness.
11) taught your child at home because the current education system is not equipped to assist them in achieving their potential.
12) volunteered with a support group organization to better serve and educate the public.

Now, since I can claim participation in all but 2 of these activities, I will share my opinion just this once.

We are blessed to live in a free country, to believe and preach as we wish. We are blessed to have a great number of our population willing to sacrifice their time and energy to make our world a better place. We are blessed to live in a time of connection and convenience.

Our system is broken, too many (but not all or even most) of our politicians are corrupt. Too often decisions made by our leaders are based on personal preferance rather than what is truly best for the public. Projects are short sighted and underfunded, red tape is thicker than many can ever cut through, and support for those in need has become far too corrupted with monies syphoned to those much less deserving and projects much less useful.

My request to all is that you stand up, stretch your legs, and take a step away from your armchair. There's a big world out there waiting for your help.

Have you heard the story about Sundays?

We coined a new phrase in our house this morning. We're not inactive, we're neurologically challenged.
Sundays and I have had a love/hate relationship for years now. Ever since my oldest boys were little, we've struggled with making it to and then through our Sunday church meetings. Our little family of neurological chaos combined with following Sunday standards has never been a joyful even. The OCD means layered clothes, zippers, buttons, & ties never feel right (and there are just so few modest dresses for little girls!) leading to multiple changes (and lots of sobbing) plus shoes come off as soon as we enter the building. Sensory issues mean church is always too bright, halls are too busy, music is too loud, and people are too close. The ADD means we are always fidgeting, talking when we shouldn't, and have trouble focusing on the lessons. The Tourrett's adds in a level of distraction with coughing & throat clearing, plus random stretching and neck rolling.
Let's just say we rarely go unnoticed. The anxiety levels increase ten fold on Sunday mornings just trying to make preparations for all the possible factors that could lead to a meltdown.
When the boys were little there was the added bonus factor of my being a "Westpack Widow." With hubby on the other side of the world, I fought my way through Sunday mornings if only for the reprieve that for 2 hours some poor Sunday school teacher would have the privilege of handling my kiddos while I soaked in the rejuvenating calmness of my own classes.
As they've gotten older the battle has become harder and I admit that I've begun dreading Sunday mornings. While meeting together with friends to learn Christ's gospel is still very rejuvenating for me, the process of getting my family through the doors had become overwhelming at times. By the time we arrive I am exhausted, rarely in a positive mood, and having a hard time not being distracted by my families idiosyncrasies. I miss the days when they were small enough we could hide in the mother's room.
So many mornings have been spent wrestling my water sensitive little man through a shower and into a tie; being kicked by him all through sacrament meeting as he repeats the words "I want to go home, I want to go home." Energy has been drained begging another child to come out of the bathroom or waiting in a corner with him until the halls are empty enough that he can calmly make it to class only to hear from his teacher that today he only hid under his chair for part of class. Meetings have been spent sitting in the hallway with my oldest son's head in my lap as I rub his back and try to calm his Tourrett's & anxiety.
I have to acknowledge how much I appreciate our wonderful church friends for not judging our squirrely little family or our lack of participation. Please know we want to be there and are grateful for feeling so welcome when we do make it through the doors.
Today we were so close. Three of us were ready, number four was almost there, and five & six had been given sick leave. Then number four fell apart, crumpled in tears because her OCD had pushed her over the edge. We were so close.
Today we made a new plan and pray the stars align for us next week. And thank a loving Heavenly Father for knowing our intentions, recognizing our struggles, and giving us the strength to deal with them.

Have you heard the story about Music?

Any one that spends any length of time with me knows that music is a HUGE part of who I am. I can't drive down the road without the radio playing, can't clean without my mp3 player on, and connect most major memories to songs. I'm constantly turning conversations into silly songs, this week's run has been little tunes about the kids to keep them moving.
Music is my key to surviving all the nonsense that life throws at me. Different points in my life have required different theme songs, sometimes ironic or funny and other times simply accurate to the moment. My latest theme song for several years now has been Rob Thomas's Unwell. All my kids know every line and Geoff can often be heard belting it out as he walks home from middle school.
Music is often also my inspiration and the only way to calm my sensory sensitive kiddos down on especially bad days. Today was one of those days. It began with Spencer crying his way to school for the second day this week and finally convincing a few watching administrators that something has to change. Immediately following that wonderful scene I spent some time on the phone with the assistant principal discussing the stress my middle schooler is feeling, also due to his sensory processing issues. After this particularly painful attempt in getting all my kiddos to school (and not fully succeeding), I rushed to work with a still crying little guy in the back seat.
Rounding the corner to work I got a new theme song. I've heard it hundreds of times, but today it hit me a little harder than before. As I felt the words sinking in, I cranked up the radio and listened as my Spencer hummed along. Thank you Rob Thomas for making it all okay again.

Someday- by Rob Thomas

You can go
You can start all over again
You can try to find a way to make another day go by
You can hide
Hold all your feelings inside
You can try to carry on when all you want to do is cry

And maybe Someday
We'll figure all this out
Try to put an end to all our doubt
Try to find a way to make things better now and
Maybe someday we'll live our lives out loud
We'll be better off somehow
Someday

Now wait
And try to find another mistake
If you throw it all away then maybe you can change your mind
You can run, oh
And when everything is over and done
You can shine a little light on everything around you
Man it's good to be so warm

And I don't want to wait
I just want to know
I just want to hear you tell me so
Give it to me straight
Tell it to me slow

Cause maybe someday
We'll figure all this out
We'll put an end to all our doubt
Try to find a way to just feel better now and
Maybe someday we'll live our lives out loud
We'll be better off somehow
Someday

Resolute

After a quick review of 2010, I have decided on one simple goal for 2011: to wake up. I realized this last week that the traumas of 2009 seemed to trickle into 2010 and I all but gave up trying in many areas of my life. I closed my eyes and ignored what I didn’t have the brain power to acknowledge and let slide what felt like too much effort. Not anymore.
• I plan to take a closer look at how I schedule my time.
• I plan to review each week with an open mind and make adjustments.
• I want to look in my children's faces as they talk about their day and enjoy
their reactions to the new things they discover.
• I want to see those around me for who they are trying to be and recognize
how my actions might affect them.
• I plan to be alert to the opportunities presented to me, both for my benefit
and to benefit others.
• I plan to step back and absorb the beauty in the world every chance I get.
• I want to smile more and see my friends’ eyes light up with joy as often as
possible.
• I want to take a hard look at myself and make some much needed changes for
my health.
Here I go, into a new year with eyes wide open! Happy New Year friends!