Birthright

Justin, my seven-year-old son with autism, recently asked me to get lost. Yup, I surprised him at school, but the surprise was on me. I approached him from behind, nudged his shoulder and was very gently greeted with, "what are you doing here mom? I thought I told you not to come." Eventually I left. But not before being laughed at by a bunch of seven-year-olds. Now every time I visit, the kids rush to warn Justin that I'm heading down the hall [insert wicked witch music here].

So, every experience has a lesson. What I learned here was that Justin was, indeed, growing up. I found this to be very confusing, especially following years and years of micro-managing his life. I lingered at the school from preschool through first grade. I closely monitored playdates and conversations. I still obsess over each GFCF meal, snack and supplement. I shop carefully for clothing that does not irritate his senses and keep household sounds/smells to a minimum. I have F.A.Q. time with each parent who invites Justin over to play- do you have pets...will the kids be eating...any loud or sudden noises...can you help him with buttoning if he needs to use the restroom...are you familiar with the epi-pen...would you please speak slowly and give short instructions.....

To varying degrees, this is what parents do. We parent. We speak for them, advocate and do the things that kids cannot do for themselves, but with the intention for them to learn how to do it all for themselves one day. For the love of getting some rest, we hope they will, as adults, have that capacity.

I was "surfing" the other day and came across information from an autistic adult. The person was frustrated over the public advocacy taking place for autistic children. He felt the gigantic organizations and parent advocacy groups did not accurately represent the needs of autistic people. Further, he opposed any dietary intervention, saying there's nothing wrong with their bodies and all autistic people should enjoy pizza, ice cream, milk, breads, cookies, sugars and all things gluten and casein. He expressed that the bulk of public advocacy was capitalistic, and most of it somehow cast a dark, pitiful shadow over the prognosis of those with autism. Autism, he felt, should be celebrated and the world at large should move over and embrace autistic people as they are.

But a happy, successful marriage between these two entities can exist. Most advocacy groups, which have grown simply in direct correlation to the increased cases of autism, consist of parents of autistic children. These parents, like myself, want to foster independence and we're planning ahead, just like any other parent would. For now, though, as we watch our young children struggle to communicate, sleep soundly and enjoy the sounds of nature, we are compelled to do something to help them. The interventions, though, must be selected carefully. In Justin's case, biomedical changes have made him physically healthier and happier.

Truth is, Justin, as an adult, may or may not want to continue what we're doing for him. The autistic young man is right in that autistic people need opportunities to speak and act for themselves...as adults, that is. For now, it is up to us to make informed, fair decisions about our own children's needs- much of the information provided by hard work and research from advocacy groups. I really hope Justin continues the diet, spirituality and other approaches we are taking. But like that experience in the classroom, I will feel a bittersweet sense of victory if one day, he speaks for himself and decides to ditch all that stuff. It is his birthright.

"...And What Is Done With Love Is Well Done..."

I am not a Vincent Van Gogh geek, but his words are so very validating. They validate my locking Chris's Blackberry in the glovebox one Saturday resulting in a family quality time all weekend. We all do seemingly strange things sometimes, but when your intention is good, then it is well done, as Van Gogh said. Two days ago, another mom of an autistic son asked me just why I decided to speak so openly about our son's autism. She said, "We would rather keep things private to avoid social stigma - we just don't want to the world to know..."

There are a lot of things I don't want the world to know too. So, I very much respect that family's desire for privacy. But my answer to that question is one that I'd like the world to know about. Virtually everything we've learned during our journey with our son came from other parents who opened up to us, shared tips, published their stories, spoke out at support groups and, most importanly, wiped up my blubber while I cried out of control. When we first got the diagnosis of autism, a local stranger (now a great friend) heard about me through the grapevine and showed up at my door with boxes of sensory toys and literature that her autistic teenage twins had outgrown...

I think my point has been made. Autism research, advocacy and action are highly parent-driven efforts. While advocacy isn't for everyone, it is a must for us. So, instead of locking our bundle of information in the glovebox, we're dispersing it among the masses, globally. It's not ours to keep - the cycle of giving must continue to flow.

Well, I found out that Van Gogh didn't cut off his entire ear- just a portion of his earlobe. No philanthropist, but still a generous giver...

Conversation With a Wild Feline

...my latest, crazy dream involved cheering my son on as he raced in a go- cart competition. Odd thing was that his vehicle was a big, fat tootsie roll with a seat carved out. "Go," I said. "People will look at you funny and may not want to be on your team. But you will win, son, and the others will be in complete awe!" What led me to this dream was a long-ago, profoundly-esoteric encounter with a tootsie roll that left me feeling completely powerless.

My son, Justin (age 7) is severely allergic to several food groups and he has autism. That's how I ended up in the book business - http://www.susandelaine.com/ . In first grade, a substitute teacher gave him a miniature tootsie roll for doing a good job in class. He was 6 years old. He's a trusting kid. And you have guessed by now that he ate it. Just one. And he became deathly ill. By the time I arrived at the school, he had already had two full doses of Benadryl and was totally disrobed, shivering, itching, moaning and saved the vomitting for the car.....

...no, I didn't sue the school. Rather, I referred back to a scenario that took place a few centuries ago in my family: My great, great grandmother walked out the back door of her village in the mountains of South Korea, probably fixing to go bury some kimchee. Anyway, as she exited, she found herself face-to-face with a very large, very wild, and very hungry feline. And very mad, according to my mom. As the cat zeroed in on dinner, my great, great grandmother decided not to run and scream, not to fight and not even to become fearful. Instead, she gathered up her big skirt, squatted down near the beast and began to speak to it. "Why are you here? You don't belong. Go back to the forest where it's beautiful and serene. Here, you will only find chaos and madness."

Please do not try this, unless you are a highly-trained yogi or animal zen master. What I learned from this story was that we do posess a lot more power than we may feel comfortable facing. We are all connected and we can easily command better circumstances and future outcomes. So we have decided to set our sights on Justin's success and wellness, rather than have prolonged fits over cats and tootsie rolls. What a superior space in which to exist. ..and the very large, hungry, wild and mad feline did walk away.

Today I Bought A Noodle Maker

...doesn't sound like the kind of news that someone would rush home to "blog" about. In fact, the thing is about as low maintenance as a French Poodle (no offense, but I know one who thinks he's human).

To make some quinoa flour noodles, the machine requires molding the dough, threading and winding, winding backwards if the dough gets stuck and dusting with flour if the dough is too moist to wind through. Then there's the very precarious job of lifting the noodle ever-so-gingerly so as not to break it. By 4:00 I balled up the dough, tore it into peices and made the most delicious dumpling soup ever.

As I stood in my kitchen, grappling with the inanimate machine, I realized that the moment was a replay of events in my life from six years ago - a labor of love, later worth every frustrating moment. As a baby, our son was diagnosed with allegies to wheat, rice, barley, egg, milk, soy, peanut, tree nuts and green peas. Yup. Green peas. And later diagnosed wtih Autism. Determined to make the perfect apple bread, pancakes, pizza, chicken nuggets and pasta dishes without those ingredients, I camped out in the kitchen until the 17th loaf of whatever finally came out stuck together and at least looking edible, scribbling corrections in different color ink on a piece of scratch paper every time a failed loaf got dumped in the can. Then, re-writing the recipe and keeping it in a grey Sketchers shoebox - a box filled to capacity with recipes, feeding instructions, notes and shopping tips for my son so someone could feed the kid, just in case I died.

And so it began. About three years and five shoe boxes later (small baby shoeboxes). At the urging of friends and family who saw some value in this collection of alternative recipes, I started typing them up and collecting them in a three-ring folder- much easier for people to find stuff in case I died. Then, when my ever-so- wise sister-in-law sat me down and advised me to publish a food allergy cookbook, I finally got it and said, "Oh, okay."

My cookbooks, "Balancing the Bowl" offer delicious, family-friendly recipes ranging from sesame-ginger chicken to pizza and apple bread. Edition 1 is for those who suffer from multiple food allergies, Edition 2 is completely gluten-free and casein-free and it discusses the link between diet, autism and development - it is suitable for those wishing to use dietary intervention to treat autism. Our son's autism improved dramatically through the use of diet, detoxification and vitamin supplements... check out my books at www.susandelaine.com or http://www.balancingthebowl.com/

So, on my way back to Linens and Things to return the noodle maker, I stopped at the grocery store and discovered shelves and shelves of quinoa spaghetti, elbows, shells and whatever. A little disapointed that they didn't have the lasagna version that I was trying to make, I headed over to the customer sevice desk to inquire about it...my point being, if you can't make it, special order it.