Tuesday, June 14, 2011

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.

1 comment:

  1. What an eloquent post! While everyone's autism is a little different, there are more commonalities than not I think, and I can relate to a lot of what you've written here.

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