From Food Issues to Communication (or the lack thereof)

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.

From “Normal and Healthy” to “Food Issues”

Present word count of WIP:  50,811

Jason at 4 months

I was already 38 by the time I was pregnant with our second child, Jason. We were living in Riverside, California, and our daughter, Allison (then 3) was thriving. She’d been born two weeks overdue and turned out to be a late walker and early talker. I suppose I expected some of the same after Jason was born.

He was pronounced “normal” and “healthy” at birth, weighing in at 6 lb. 14 oz. He was a really good, quiet baby, and nursed often. At six months, when I started introducing him to cereal and other baby foods, he didn’t show much interest, still preferring the breast. He quickly refused many of the baby foods I tried to give him, never even trying any of the meats. The only fruits and vegetables I could get him to eat for a while were bananas, applesauce, pears, butternut squash, and carrots. Soon, he started refusing the carrots. One day I tricked him into a bite of carrots and he gagged it up. After that, he wouldn’t eat any baby food.

I supposed I had lost his trust. In the meantime, my breast milk was drying up, so I finally weaned him at 18 months. After that, he refused to drink anything but water (which is the only thing he’ll drink to this day). As a toddler, the only things he would eat were plain white bread (without the crust) and Honey Nut Cheerios, but once he tasted plain Cheerios, he wouldn’t go back to the other kind. This became a pattern for him. Once he got used to anything new,  the old routine would be left behind.

Obviously, I was concerned about his diet. His pediatrician said I should force the matter. He said no child would willingly starve himself to death, so I tried to force other foods on two separate occasions. Both times, he refused, got sick (flu, fever, etc.) and I just didn’t have the heart to go back to starving him after he got better. I did manage to add a calcium supplement that had been recommended by the doctor, but it took a great deal of coaxing and even threatening to take away one of his favorite toys to get him to swallow a teaspoon of anything that didn’t look like water. It was that way with all medicines (and still is, to some extent), though he did get to start liking the sweet-tasting supplement.

We finally just gave in to his strange eating habits. He progressed (if you can call it that) from Cheerios and bread to white toast with butter, then Ritz Bits with Peanut Butter, then Ritz Bits with Cheese, then Grilled Cheese sandwiches, then French Toast, then marshmallow pieces in Lucky Charms (that was an accident), then a certain brand of Cinnamon-flavored Alphabet Cookies, then Eggo Pancakes, then Lays Baked Potato Chips, Vanilla Ice Cream, and Bananas (Yay!). He would never eat more than 2-3 of these items during any particular phase of his development.

The pediatrician thought we were “pushover parents.” I know because later, when I obtained a copy of Jason’s medical records for his first IEP, I was able to read all the doctor’s notations from my son’s visits and examinations. But that was before we–or the pediatrician–knew what Asperger’s syndrome (AS) was. AS only became an official diagnosis the year after Jason was born, so by the time we were dealing with his food issues, it was still very unknown, even within the medical community. Sure, the doctors knew about autism, but this was a very high-functioning autistic spectrum disorder, and you would never have thought Jason to be autistic at first, or even second glance.

We soon found out, however, that we were dealing with far more than a “picky eater.”

On Monday, I’ll share the other first clue to his “differentness.”

Originally posted 2012-04-06 14:06:14.

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

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.

Consider Organizations, Not Just Individuals

Present word count of WIP:  47,161

Okay, I slowed down on my output the last two days. First, I was bummed yesterday at receiving another rejection. It was so nicely worded, however, and included enough good feedback that I almost felt guilty about feeling depressed. (At least, I know the agent judges me to be talented and would definitely consider future proposals.) Then today, things really began to look up and I simply couldn’t concentrate on writing all morning. I may have an important announcement to make next week, so stay tuned!

For now, Seth Godin’s next bit of Advice for Authors:

16. Most books that sell by the truckload sell by the caseload. In other words, sell to organizations that buy on behalf of their members/employees.

This got me thinking about another way to market my second novel, LAPS, once it gets published. Since a couple of key characters in the novel have Asperger’s syndrome, I could contact local chapters of Autistic Support groups and donate cases of books or, at least, provide them at deep discounts simply to help spread word of the book.

Autism Society of America

Since my son has AS, we have been participating in a study put on by the University of Washington. In fact, we recently gave them permission to share all our data with the National Instititute for Health. They might also appreciate copies of the novel. It’s something to keep in mind, for certain.

Asperger's Under the Umbrella of Autism Spectrum Disorders

How about you? Can you think of organizations that might have a natural tie-in to your most recent or upcoming book?

Originally posted 2012-03-09 16:45:10.

Checklists for the IEP

Present word count of WIP:  53,497

I know. I didn’t post yesterday as promised. I’m afraid that the closer I get to the LDStorymakers Conference next week, the harder it’s getting to keep up with everything I need to do daily. Still, I’ll try to finish this out (even if it runs into May a bit).

Also, I said my next posting would be about changes between his First and Second Grade years. But then I realized I ought to include two lists I provided (prepared in advance) at his IEP at the end of his First Grade year (in preparation for Second Grade). Parents of children on the autism spectrum need to go into these meetings as fully informed and equipped as possible. I believe I came across the first, a suggested checklist outlining suggested modifications, adaptations, and support systems that might be useful for a child with Asperger’s, on the Online Asperger’s Syndrome Information and Support (O.A.S.I.S.) center website (which has since changed a bit since they combined with another support group). But I don’t recall for certain. Anyway, I went ahead and adjusted it a bit to more closely fit what I thought Jason needed.

Here it is:

Specially Designed Instructions for Educators:

IEP Modification/Adaptations/Support Checklist

For:  Jason Mills

Date:  May 10, 2001

Grade:  First & Second

Communicating to the Student:

____Be concrete and specific

____Avoid using vague terms like later, maybe, “why did you do that?”

____Slow down the pace

____If necessary for understanding, break tasks down into smaller steps

____Use gestures, modeling, and demonstrations with verbalization

____Provide accurate, prior information about change

____Provide accurate, prior information about expectations

____Specifically engage attention visually, verbally, or physically

____Avoid idioms, double meanings, and sarcasm

 

Encouraging Communication with the Student:

____Pause, listen, and wait

____Watch and listen to attempts to respond

____Respond positively to attempts

____Model correct format without correction

____Encourage input and choice when possible

 

Social Supports:

____Protect the child from bullying and teasing

____Praise classmates when they treat him with compassion

____Create cooperative learning situations where he can share his proficiencies

____Establish a “buddy system” in each class he attends

____Build in time to watch, encourage watching and physical proximity

____Practice on specific skills through natural activities with one peer

____Practice on specific skills through natural activities with a few peers

____Structured activities with set interaction patterns and roles

____Focus on social process rather than end product

____Specific teaching, rehearsal, practicing, and modeling in natural settings of the

following skills:

____turn-taking     ____complimenting     ____negotiating     ____responding

____inviting     ____waiting     ____greeting     ____repairing breakdowns

____joining others     ____accepting answers of others     ____joking and teasing

____accepting success of others     ____taking the lead

____following ideas of others

 ____Shared interests using inteerests and strengths

____Teacher or school personnel advocate who will problem solve and facilitate

____Individualize social stories giving specific situations emphasizing descriptions and

perspectives

____Concentrate on changing unacceptable behaviors and ignore those that are simply

“odd”

 

Environment and Routine:

____Provide a predictable and safe environment

____Minimize transitions

____Offer consistent daily routine

____Avoid surprises, prepare him thoroughly and in advance for special activities,

altered schedules, or other changes, regardless of how minimal

____Talk him through stressful situations or remove him from the situation

____Provide personal space in resource or other room for relaxation

____Reduce distractions and sensory overloads, including:

____noise     ____vision     ____smell

 ____Allow modifications as needed to deal with sensitivity to touch issues, such as

immersing hand in gooey liquid

 

Presentation of Material:

____Presented visually through:

____written     ____demonstration     ____pictured and written     ____pictured

____objects     ____calendars/maps/charts/diagrams     ____computers

____video

 ____Use established routines

____Consistent use of expectations

____Peer tutoring

____Divide instruction into small, sequential steps

____Provide repeated opportunities to practice

____Provide needed prompts and cues

 

Assessment and Assignments:

____Modify difficulty where needed

____Shorten

____Alter activity

____Highlight text

____Provide choice of activity

____Learn format ahead of time through rehearsal

____Modify questions format

____Allow extra time

____Apply learning to real situations

____Provide visual cues as a way of teaching how to summarize/write

 

Self Management/Behavior:

____Teach use of timer or other visual cues

____Individualized contract

____Provide reinforcement that is:

____individualized     ____immediate     ____concrete     ____other

____Incorporate strengths and interests into daily plan

____Encourage choices and decision making where appropriate

____Analyze the purpose of behavior from student perspective

____Translate purpose into skills to be taught

____Avoid pressure to “be good” or other abstract expectations

____Avoid punitive measures that lower self esteem, increase anxiety, and aren’t

understood, like:

____taking away set routines, free time, exercise     ____sending home

____lecturing or yelling at

 ____Avoid disciplinary actions for behaviors that are part of the disorder, i.e.:

____avoidance of eye contact

____talking to self

____slow response time

____lack of “respect” for others

____repeating words or phrases

____upset in crowds or with noise

____anxious

____perseverating on topic of interest

____upset by change

 

Homework:

____Individualized

____Shortened

____No more than one hour per evening

____More time and help

 

Staying on Task:

____Break assignments down into small units

____Provide frequent teacher feedback and redirection

____Provide time in resource room for completion of classwork

____Sit him next to buddy so buddy can remind him to return to task or listen to lesson

____If necessary, lessen homework expectations

 

I know now how overwhelming all of that would look to an elementary teacher with a class of 30-35 kids. Why? Because my daughter is just completing her first year of teaching Fourth Graders, and I can’t believe how overloaded she is and she has only one student who appears to be on the autism spectrum.

On top of that list, I presented the school personnel with another list I’d adapted from the Technical Assistance Manual on Autism for Kentucky Schools by Nancy Dalrymple and Lisa Ruble. (I would imagine you could google it, but if you can’t find it and want it, let me know by email.) The list is titled, “Behaviors That May Be Personal Challenges For A Student With An Autistic Spectrum Disorder,” and I checked off every one of the behaviors that I thought applied to Jason.

But I didn’t go into that IEP expecting to receive ALL of those accommodations. I simply hoped to receive some, if not most, of them. Remember, the IEP, if approached correctly (meaning if you’re polite, well-informed, prepared, and willing to meet the school halfway) is like a negotiation. You ask for everything possible, but in the back of your mind, you decide those things you absolutely won’t give in on for the sake of your child.

By asking for so much, I certainly got the school’s and his Second Grade teacher’s attention. I could be assured she wouldn’t be ignoring him that next year. And I assured her that I would be there at least three days a week to help her out…not just with Jason, but with all the kids, or with whatever she needed. As I said before, it certainly helped that I was slated to be the next PTO President, but it helped even more that I was able and willing to lighten the teacher’s load. After all, she/he is the one who’s dealing with your child on a daily basis for at least six hours. These teachers need and deserve our help.

Tomorrow, I’ll post about his growth that next year.

Jason with his fabulous Second Grade Teacher, Mrs. Frausto. Notice he's holding two of the Powerpuff Girls.

Originally posted 2012-04-27 10:26:49.