I can’t remember the exact word exchange, but I remember the way the tears felt as they stung my eyes when I realized my son’s wish would come true.
Samuel is fourteen and has autism. He is “so close to normal” it poses a different brand of difficulty than other diagnoses because it doesn't always "show" and when it does, it can surprise people who then don't understand his different ways of being or behavior.
Naturally none of us in my family or group of friends, neurotypical or not, would be classified as “normal”. We are square pegs in a world of round holes, we are the singers in the world of non-singers and the loud laughers in the world of “shhh! Don’t embarrass me!” clan.
Negotiating life is different for kids on the spectrum. I have often said I wish I could experience one day with my son's senses and ways of thinking so that I could truly understand his everyday experience. My brother John obviously had Down’s Syndrome as well as autism. He had the physical characteristics of the disorder. People were automatically either more gentle and compassionate or openly bigoted right from the first moment they saw him.
Samuel is at the age when he is beginning to face the “rest of his life” as in college and beyond, and he knows he can find kindred energy among the nerds of the world so he is actively seeking them out and praising them. He is one, after all, and identity is power.
We went to his mecca one Monday in July. For him, the most sacred location in the world is headquarters for Nintendo America.
It was enough to take a photo out front with the sign. He was thrilled with that alone.
He stayed in the car when I went inside to see if there was any way possible we could go inside to just visit the store, to just say “I’ve been to my version of heaven.”
“This is a closed campus,” the receptionist told me. I respected this fact. I understood it.
As a Mom of a child with special needs, I have learned how to advocate for my son. I am equally fierce for my daughters. We almost always hear “no no no no” as simply a step on the way to “well, just this one time” so I didn’t stop speaking politely about my son and his love of all things Nintendo to the receptionist.
My older daughters would have rolled their eyes and said, “Are you playing the autism card again?”
Samuel is a good kid. He doesn’t ask for much. He didn’t ask to go inside the building. He didn’t go in with me when I made the request.
He also deserves a mom who will at least try to make things work for him.
“Is your son with you?” the receptionist asked.
“Yes, he is in the parking lot. He was afraid to come in….” and it may have been in that moment when she said, “sometimes we make exceptions” and my tears erupted, uninvited.
I had to agree not to give away any secrets I happened upon on my visit to headquarters. I signed my name to that agreement. We had an escort the entire time we were in the building. We bought our items and left within thirty minutes.
AND it is a memory my son will hold forever. It is bound to become a legend. We are framing his guest pass with his photo and hanging it on his bedroom wall. The clerk telling him about (and inviting him to) the Nintendo lounge at Comic-Con next year was a reward beyond measure.
This adventure is very similar to what I have done to get Samuel's educational needs met.
You don’t have to be a professional advocate to make both your child’s dreams come true and get his or her educational needs met. Both scenarios are similar for all kids, not only special needs kids.
Here’s a simple road map of what to do for nearly any situation of advocacy for your child:
- Show up. Yes: approach the desk, walk through the door, make eye contact and smile. Don’t just email and insist it won’t work. Face-to-face is always best. For everything, including kids dreams coming true and making educational plans.
- Ask. Make your request. Give information without being pushy or demanding or emotional. I simply said “My son loves all things Nintendo, it’s his thing.” The woman (gatekeeper) knew enough about autism to recognize the significance of this. Keep your request clean, crisp and give space for the other person to respond before you go on and on and on with why your request is valid, important or deserves immediate “proper” attention.
- Be unattached to the outcome. I knew going in I might not get Samuel into the headquarters. He was thrilled just taking the photo outside. Don’t promise your kids (or yourself!) anything. Make the process of asking be its own reward. Sometimes you’ll get what you want on the first shot, sometimes you will need to leave and start a polite letter writing campaign or elect to try for something else entirely.
- No expectations. This is connected very much with number 3. It also helps with keeping our emotions in check. When Samuel was first diagnosed with autism, I cried and lost my temper almost daily with the very people who could help me the most and this frustrated all of us. It also tends to build walls rather than bridges. I learned to stack up the facts and present simply facts rather than attach my emotions and beliefs in a flourish of tear laced adjectives and adverbs or arguments.
- Be grateful, no matter what. “Thank you!” goes a long way, again - no matter the outcome.
Samuel continues to “Shhh! Shhh! Shhh!” me when I start talking about our Nintendo experience. He takes my agreement to keep secrets seriously and follow rules closely. I haven’t told you anything about our experience there, only that we had it.
My hope and prayer is my advocacy is simple enough for you to try, too. Our kids all deserve it.
Julie Jordan Scott inspires people to experience artistic rebirth via her programs, playshops, books, performances and simply being herself out in the world. She is a writer, creative life coach, speaker, performance poet, Mommy-extraordinaire and mixed-media artist whose Writing Camps and Writing Playgrounds permanently transform people's creative lives. Watch for the announcement of new programs coming in September 2015 and beyond.
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