StoryCorps Video

Jules of Seven Impossible Things Before Breakfast sent me this video by StoryCorps. It's an animated video of Joshua Littman, a 12 year old boy with Asperger syndrome, interviewing his mom, Sarah:

Q&A from StoryCorps on Vimeo.

Rainmom: A Blog About Parenting a Child With Autism

Rainmom is an assistant professor of religious studies and a mom of two children, of whom the elder has autism. When I went to college with her, I got to enjoy her stunning soprano voice in productions of La Boheme and The Marriage of Figaro. Now, I read her thoughtful, insightful blog about raising a child with autism, and though I don't often comment, I take courage and wisdom from it.

My daughter's challenges are different from her son's, but there is definitely overlap in what we deal with as parents. When Rainmom wrote, "The Ohio House of Representatives has voted that insurance companies cannot decline to cover expenses related to autism and diabetes" (Little Victories), I realized that I had better find out where Washington State stood in that matter. I found the Autism Society of Washington (where you can find explanations for the wide range of diagnoses from "classic" autism to Pervasive Developmental Disorder).

We're still waiting for appointments to have our daughter assessed this spring. It's possible that she'll get a diagnosis that will help her obtain the services she needs, but it's also possible that like my youngest brother, she will be classified an "enigma."

I want Lucia to get the help she needs. I want her to have friends who accept her, quirks and all. It's very painful to see her run up to children, eager to be friends, and watch them shrink away from her into their parents. I understand why they do that, and I certainly don't like it when anyone invades my personal space. Still, I internally grumble, "Where are all those exuberant, extroverted kids when I need them? They're allegedly supposed to be in the majority."

July 25, 2010: Now that Lucia is older, I feel it is no longer appropriate to write about her. I decided not to delete older posts, but I want to respect her privacy by not writing about her in a public forum, even if she does have a pseudonym. If you have been reading the blog for awhile and wonder what is going on these days, please feel free to contact me through email.

Noodle Pots and No-Boundaries

The House of Glee has returned from a trip back East in which we celebrated the wedding of my cousin to a lovely woman my brother and I refer to as our "cousin-in-law". The wedding took place outside on my aunt and uncle's Pennsylvania farm. Although it was chilly at times, the sun shone on the wedding day, and afterward, we had the reception in a tent. The day after, we enjoyed a picnic with the local and out-of-town guests.

I return to this blog wondering what I am going to do with it. I wish I were still anonymous, but perhaps the fact that I am not protects me from writing something I would regret publishing later. I can still share stories and songs with you, but I am always going to be holding something of myself back. I don't want to overshare, but there are times when writing about some of my struggles could be of benefit to others. I'm going to take a risk and see if it's true.

Here is what happened at the airport yesterday:

While we were waiting to board our connecting flight, Lucia struck up a conversation with a friendly passenger. The passenger (whom I will name No-Boundaries) told me that she worked with autistic children. That's great, I thought. I figured that she picked up on some of my daughter's mannerisms and could tell that there was something going on that had not yet been diagnosed. Then, she turned to my daughter and asked, "Are you autistic?" Lucia responded with, "What's autistic?"

As No-Boundaries began to explain to Lucia, I shook my head and explained to No-Boundaries that we were waiting for a diagnosis from a professional who would give a full-spectrum of tests. No-Boundaries overrode me to say loudly that Lucia probably had Asperger syndrome and expounded on all the symptoms that people with autism and Asperger syndrome had that Lucia shared.

I wish that I had just told No-Boundaries that it was inappropriate for her to ask Lucia (or any child!) if s/he had autism and not to diagnose my child in the airport, thank you. I was cautious about calling any more attention to this one-sided conversation so I restated that we had been counseled to avoid labels until Lucia received the full-spectrum of tests. No-Boundaries' husband piped up, "And you will get the full-spectrum. You're going to miss those questions when [your daughter] becomes withdrawn."

Someone else would have had sharp, witty responses that would have silenced No-Boundaries and her husband. (Maybe someone else would have knocked them in the teeth, too.) However, there was no winning in this situation. All they could register was the sound of their own voices. Then, No-Boundaries said goodbye to Lucia and told us what a wonderful child we had.

Thanks, lady.

It was obvious that No-Boundaries had issues of her own. I was incredulous that someone who claimed to love working with autistic children and could spout off a pat definition of autism in terms of how it related to social interactions could have no sense of emotional intelligence or sensitivity awareness. I had an armload of armchair diagnoses for her, too.

We don't know yet what Lucia's specific diagnosis is. We are committed to helping her through her challenges. It may well be that Lucia helps Bede and me through our challenges as well-- namely, learning how to tell busybodies to go sink their heads in pots of noodles.

I'll admit that I just edited myself. My original sentence was much ruder.