Thursday, August 23, 2012

NO-rmal



Photo credit: Christina Valentine Photography

I used to think that I wanted a “normal” family. You know, sons who were star athletes and a daughter who loved playing sports just as much as she loved playing with dolls and ponies. We would be going to academic award assemblies, be playing a pivotal role in the PTA, and be a part of every booster club available. We would only visit the doctor annually for our kids’ well check and (of course) for their annual sports physical. Every year, we’d take vacations of epic proportions: Disney World, Hawaii, Coast-to-Coast road trips, etc. Each one packed with life changing experiences for our kids and for us as well.

But that was before my denial bubble burst, before the reality of my life would no longer be avoidable. That was before the autism diagnoses. Before the checklists, the MRI’s, EEG’s, and sleep studies, before all of the medicines and supplements. Way before commuting 2-3 hours to see multiple doctors seemed like it would beneficial. All of that was before I realized my path would not only test the strength of my character but my marriage as well.

The term “normal” is odd because it is such a vague term and it often depends on perspective. For example, to a seasoned marathon runner, a “normal” run could be 10-15 miles, whereas for a person who is out of shape, the only “normal” run would be running from the car to inside when it’s raining. For a family seeking to eat “Pure” or allergen-free, normal grocery shopping includes multiple stops to local farms, co-ops, the natural food store as well as ordering online from farms, dairies, and other vendors states away. To another, going to more than one store for groceries is just NOT normal and a waste of time. But yet, we all seem to unconsciously subscribe to a notion that there is one universal definition for “normal” especially when it comes to our children.

Even after my oldest son’s diagnosis of Asperger’s, I still yearned for “normal.” Not necessarily for me, but for my son who struggled in school, especially with social skills. He longed to have friends, to be accepted. I just wanted him to have a “normal” experience, just like every other kid. He was constantly bullied, picked on, and would beg me to keep him home. We went to meeting after meeting after meeting with the teacher & the administrators, and we would advocate in order for my son to have a “normal” school experience. With the hand he was dealt in this life, I felt like at least he deserved normal.

My perspective changed, however, when I was able to attend a one day surf camp put on by Surfer’s Healing at Wrightsville Beach, NC. Everywhere we looked, we were surrounded by people who understood what we go through. When Braydon didn’t respond someone’s question or statement, they continued on with the conversation, as if he had responded. They didn’t stare at him and then glance at me with the “How dare you let him be so rude to me!” look. I’ve been plenty of places where the extended “Autism Family” has gathered at conferences, rallies, support groups, etc. But those experiences have never impacted me so much like the day with Surfer’s Healing did.

I overheard one of the volunteers at the surf camp talking with my husband about how the ocean was so pure and every time you go into the ocean’s water, you come out new. As I stood on the beach, with the sun shining down on me, sand between my toes, and seeing the smile plastered on my son’s face, it hit me.  NO! I don’t have to accept anyone’s definition of normal. NO! I don’t have to feel bad that Braydon’s doesn’t meet anyone else’s standards. NO more guilt trips, NO more weeping for what he won’t have that other kids have. No more subscribing to “normal”. He went into the ocean with Surfer’s Healing and just like the volunteer said, Braydon came out new and so did his Mama.

Photo Credit: S.Hughes Photography
So from today on, every morning I will wake up next to a picture of my son surfing as a reminder to say NO! to anyone’s definition of normal. Our normal involves many trips to different doctors and therapists. My son doesn’t have to respond to people if he doesn’t want to and I won’t let anyone make me feel bad about it. Our normal requires extra effort, extra understanding, and lots of extra grace on everyone’s part. Vacation means anytime away from home, whether that’s overnight at a hotel before an MRI or a daytrip to the Lego store. It means tons of flexibility and very low expectations. At birthday parties, whether it is playing by himself, collecting rocks & sticks, of actually participating in the party, I won’t feel embarrassed as long as Braydon is having fun!  We will keep our eyes on what works for OUR family and try to encourage people to enter into our normal to gain some perspective. After all, Epicurus said “Do not ruin what you have by desiring what you have not…” (http://www.psychologytoday.com/blog/the-happiness-project/200912/do-not-spoil-what-you-have-desiring-what-you-have-not)



6 comments:

Mare said...

Thanks for sharing, Sharon!

Sharon said...

I am incredibly proud of you, Christy. How good for Braydon that he has parents like you! Remember, Bill Gates lives with Asperger's, and he hasn't exactly done badly for himself! Sending lots of love to all of you!

Ken said...

Christy,
A great example of how you live this out was when we went to the Open House. You handled Braydon's reaction so well. I learned a lot from watching you! A very meaningful blog post, for sure.
Love,
Dad

Janice said...

Christy, watching you and helping with Braydon has given me a whole new prespective for working with EC children and parents! I have and still am learning so much from you! Thank you for being willing to take the challenge.....the rewards will be so much more than you think! Love the Rue Crew!!! Love, Mom

steven sumner said...

Christy, That was the most beautifully articulate and emotionally healthy treatise on the life and family of a special needs child I have ever read. Congratulations on that very one-of- a-kind revelation. God bless you and your beautiful family.

steven sumner said...

For my part I really was touched by your stand and impressed by what a life changing perspective you have chosen. My mother actually wrote the comment above this and showed it to me.