Tag Archives: Autism Awareness Month

From Food Issues to Communication (or the lack thereof)

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Present word count of WIP:  50,792 (yes, I refined a bit)

Before I continue my description of our own Asperger’s journey, I want to make three things clear:

1) No two individuals with an Autistic Spectrum Disorder (including Asperger’s) are alike. Some will have food issues, others won’t. Some may be strong in language, others in match and science, etc. These postings, then, are about our particular journey. There are plenty of other stories online. (I know this because I sought them out over a decade ago when I was hungry to know more, and I’m certain there are many more today than there were then.) If you want to understand the disorder better in all its permutations, check out the website for Autism Speaks, or if you’re particularly interested in Asperger’s, then I recommend the Online Asperger Information and Support Center. Also, I don’t pretend that Autism is the only developmental disability in the world. A fellow writer and friend of mine, Margaret Turley, included a special mention of Autism at the end of March as a part of National Developmental Disabilities Month. You might want to check out all her postings last month.

2) Jason has given me permission to share his story in this way. He comprehends that there is a need to help increase understanding about Autism in all its forms, as well as to seek its cause(s). We are doing this for the same reason we decided to take part in IAN, the Interactive Autism Network set up to link researchers with families impacted by ASD. We want to provide support, answers, and a sense of community for individuals who, for too long, have felt like outsiders in this “neurotypical” world.

3) Jason’s story will continue both here and on the website of Madison House Autism Foundation, a non-profit group formed by friends of mine in Maryland to assist those with autism (and their families) as they navigate the rest of their lives once they reach adulthood. Much has been written and produced to help children with autism, but what about when they grow up? Or what about those who don’t discover why they have felt so “different” all these years until they are older? With so many diagnosed on the autistic spectrum, we are facing a future filled with such individuals as my son. As Jason graduates from high school next month and begins to make his way into the adult world, I’ll try to share the challenges, setbacks, and triumphs every second and fourth Friday of the month.

Jason, aged 2 and 1/2, with Ariel toy

Now…on with our journey.

Early on, there were other signals that alerted me to the fact that Jason wasn’t a typical kid. Because our daughter had been a late walker, I wasn’t so concerned about his delay in gross motor skills. By the age of 2, however, he still hadn’t seemed to clue in to the process of communication.

Allison was an early talker, but Jason said very little. In fact, I began to wonder if he had a hearing problem because, often, when I’d call out to him, he wouldn’t even turn around, let alone respond. But the pediatrician checked his hearing and found it to be perfectly normal.

It wasn’t that he couldn’t speak or say words. He was very adept at repeating any word I told him. His vocabulary was adequate; he just didn’t seem to know what to do with all those words. I’d ask him a question like, “Do you want some water?” Instead of nodding or shaking his head, or saying “Yes” or “No,” he’d simply repeat my question or at least the last part of it. (I came to find out later that this behavior is called “echolalia,” a condition that often presents itself in autism and other developmental disabilities.)

By this time, my daughter was enrolled in Kindergarten and I was aware that her local elementary school had a speech therapist. I figured he needed speech therapy, so I called up the school. While the therapist would have been happy to meet with me, she fortunately pointed me to a much better resource: the school district’s Sunshine Early Childhood Center. I made an appointment there to have Jason tested and took him down on the appointed day–a Friday.

They tested him for everything: physical abilities, speech abilities, drawing abilities, social abilities, etc. As I recall, it took a good hour and a half, if not two hours. Then, at the end, they told me:

“Mrs. Mills, Jason definitely qualifies for our program. He’s communicatively handicapped. He’s delayed in fine and gross motor skills. And he’s orally and tactilely defensive.”

(I knew he was very careful about what he’d allow me to put in his mouth, but I wondered about the tactile part until I recalled the way I’d had to cut labels out of his tee shirts and pants…and how much he hated the feeling of rain on his head, or getting his clothes wet…and the way he howled whenever I had his hair cut.)

They didn’t call it autism then because he seemed so high-functioning in some ways (he really knew his letters and numbers), and this was in 1996, less than two years after Asperger’s became an official diagnosis.

Still, I was happy to have any kind of conclusion, so I said, “Fine. What do I do next?”

Keep in mind that I was only now getting used to having my daughter gone every morning for kindergarten. She had done a couple of years of pre-school before that but they had met only three mornings a week. I figured this Sunshine School was going to be like a pre-school. Boy, was I wrong!

The school principal told me to bring him to the school at 8 am on Monday, then pick him up at 3 pm. Thereafter, she told me, a bus would pick him up from our house in the morning and deliver him back in the afternoon.

I looked down at my darling little two-and-a-half-year-old boy and gulped. “Are we talking two or three days a week?”

“Every day,” she said. I remember that my mouth dropped open.

“Five days a week? He’s going to be in school longer than his older sister, and she’s three years older than him!”

They assured me that he needed it and that he would get used to it.

“But he’s not even toilet trained,” I argued. (M&Ms had worked wonders with his sister, but there wasn’t any special food I could use to bribe Jason.)

“Oh, we’ll take care of that. We’ve got special training potties in every classroom.”

Still stunned, I followed the principal and speech therapist as they walked us around the school to show me all the facilities. Not only would Jason be in a regular classroom with other disabled children, but he would receive regular speech therapy and occupational therapy. Talk about early intervention! Of course, at the time I didn’t appreciate the life-changing gift they were providing because I still knew next to nothing about autism.

All I knew that day was that, come Monday, I was going to be a very lonely mother all morning and a very worried mother all day. And I couldn’t help wondering if this, like the carrots, would lessen his trust in me.

Would he still love me Monday afternoon?

On Friday, I’ll post about Jason’s “Sunshine” experience.

Originally posted 2012-04-09 10:56:20.

Autism: 1 in 88…My Son: 1 in 1,000,000

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Present word count of WIP:  49,832

1 in 88. That’s a much higher percentage than it was back in 1996, when I first suspected something was off about my son…or even in 2000 when he was a first grader and I got the official diagnosis. And in some places, like Utah, the rate is even higher (1 in 47).

Whether it’s an epidemic or not, it’s certainly a direct concern to over a million families here in the U.S. and many more around the world. Then multiply that million by at least ten for all the families indirectly concerned (relatives, teachers, health care professionals, scientists, taxpayers) and you might begin to understand why autism is a topic that won’t go away. There is a very good reason we devote an entire month – April – to  Autism Awareness.

But I don’t intend to cite figures and percentages here. I’m all about stories. So, for my postings during this month, I thought I’d share my son’s story. After all, he is the reason I wrote my second novel – the one that will be published later this year.  I’m not sure yet of the title. That may be determined today when I meet with Linda to sign the publishing contract. But whatever it’s called, it will be, at its core, Jason’s story. There are bits and pieces of him throughout, either in detail or symbolism.

I’m traveling right now, so my earliest recordings of our Asperger’s journey with him are inaccessible. However, let me share a glimpse of the kind of challenge we still face now that he is 18.

While no two children with an Autistic Spectrum Disorder (ASD) are alike, traveling with them is ALWAYS hard. Why? Because travel is all about change: changing location, changing the daily routine, changing the people you’re around, changing the places you eat and sleep, etc. And any change is most difficult for these individuals. They tend to want to cling to the familiar…even more so than the rest of us do.

We came down to Utah to attend our church’s General Conference, see our daughter, and sign my contract. Jason was reluctant, particularly since he was still getting over a chest cold, but he agreed since this might be our last opportunity to attend conference as a family for at least a few years. Besides, he had a particular question he was hoping to have answered during conference.

So, we packed up the grill, his preferred plate, fork, glass, and everything else I’d need to make his special grilled cheese sandwiches. He brought his pillow (to be honest, I wish I’d brought mine, as well) and three of his favorite books, his iPod Touch, etc. And once we got here and settled into our hotel, we tried to restore as much of his routine as possible.

He went to the Priesthood Session with his father, coughing through much of it. Later that night, my husband and I worried over how he might react should his particular question not be answered over the pulpit by one of the leaders or General Authorities. After all, he had been promised by church leaders that if you prayed faithfully to receive a particular answer during conference, you would get it. And those with Asperger’s take such things very literally. But by then, we knew what his question was and it was so particular that we both shook our heads in doubt. You see, the likelihood of his prayer being answered in that way wasn’t anything like 1 in 88. It was more like 1 in 1,000,000. Still, we’ve all known miracles to happen.

I’m sure, by now, you’re dying to know his question. Like others with Asperger’s (a high functioning type of ASD), Jason has his obsessive interests. For him, it’s media – particularly movies and books. He loves all things Disney and he loves the Harry Potter series (both movies and books). So, when he finally shared his question, we learned it was this:

Once and for all, are Disney and Harry Potter looked upon with approval by the Church?

I remember the way he perked up when President Uchtdorf began his talk Sunday morning by saying he’d felt moved to respond to the concerns of a mother about her two children. Surely, he must have thought, this will be my answer. Then, as the talk proceeded to focus on the dangers of contention and holding onto grievances, my son sagged back in his chair. Still no answer.

After the Sunday morning session, we had a talk about conference talks. We explained that while  some may provide very specific answers, they usually deal with general principles of the gospel. I told him that his best answer probably came Saturday morning when the prophet, himself, reiterated that we should seek for those things “that are virtuous, lovely, or of good report, or praiseworthy.” We told him that, guided by the Holy Ghost, he needed to determine for himself whether Disney movies and the Harry Potter series was of good report, praiseworthy, and uplifting.

Apparently, he made that decision. As we sat in the Conference Center waiting for the afternoon session to start, he pulled out my Kindle and began reading “Harry Potter and the Sorcerer’s Stone.”

Talk about juxtaposing the sacred and the secular. Nevertheless, it calmed him and he hardly coughed at all during the whole session.

On Friday, I’ll post about how this Asperger’s journey began.

 

Originally posted 2012-04-02 06:00:56.

The Book Business

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Present word count in WIP:  47,161

(That doesn’t count the fact that I did write today…I wrote a 999-word personal essay to be posted on Danyelle Fergusen’s blog some time in April–Autism Awareness Month. I’ll let you know when it’s up and link to it. She asked for those who’ve dealt with autistic spectrum disorders up close and personal to share some positive, uplifting stories, so I complied.)

And now for Seth Godin’s last three pieces of Advice for Authors:

17. Publishing a book is not the same as printing a book. Publishing is about marketing and sales and distribution and risk. If you don’t want to be in that business, don’t! Printing a book is trivially easy. Don’t let anyone tell you it’s not. You’ll find plenty of printers who can match the look and feel of the bestselling book of your choice for just a few dollars a copy. That’s not the hard part.

18. Bookstores, in general, are run by absolutely terrific people. Bookstores, in general, are really lousy businesses. They are often where books go to die. While some readers will discover your book in a store, it’s way more likely they will discover the book before they get to the store, and the store is just there hoping to have the right book for the right person at the time she wants it. If the match isn’t made, no sale.

19. Writing a book is a tremendous experience. It pays off intellectually. It clarifies your thinking. It builds credibility. It is a living engine of marketing and idea spreading, working every day to deliver your message with authority. You should write one.

I love how he covers all three aspects of the business in these last three tips–publishing, marketing, and writing.

Publishing isn’t easy and that’s why it’s so difficult for writers to break into it. They have to build up their writing muscles over time so that the content they offer is worth the publishers’ risk. They have to build up their fan base over time so that, again, the publisher will be tempted to take a chance on them. And then, once they’re in, from all I can observe it becomes like a long-distance race. Either they’re in it for the long haul–all the signings, appearances, marketing, and, most importantly, more writing–or they get left by the wayside.

Bookstores are becoming more and more obsolete because now the reader can go directly to their chosen writer via Amazon.com or another online bookstore. And with the advent of the ebook, who needs shelves? Of course, this is not news. But more and more, I foresee bookstores using their personal touch to compete online with the big elephant. Check out Just the Right Book, for example. Here is a bookseller who got smart, moved her bookstore online and is offering the kind of service Amazon is too big and impersonal to give. If you doubt me, check out the Just the Right Book Facebook page. This is one bookstore, in my opinion, that is not a lousy business. They have vision.

As for his last tip, I readily agree. I always learn more about a topic (and myself) when I have to write about it. Once I can encapsulate my thoughts or the pictures in my head in a well-described scene, complete with realistic dialogue (both inner and outer), I am enriched…and, if I’ve done my job right as a writer, my words will likewise enrich the reader. The most fascinating thing about the writing process, besides the splashes of insight and inspiration, is that no two readers will read the same words with exactly the same result. Why? Because the reader brings his/her own life experience to meld with the author’s. That’s why the author-reader relationship is so valuable.

If you’ve ever been tempted to write your own book, do it!

 

 

Originally posted 2012-03-12 21:22:00.