From Communicatively Handicapped to…Genius?

Present word count of WIP:  51,026

I felt like the most heartless mother in the world that next Monday when I took him to the Sunshine School and then left, his crying following me all the way out to the parking lot. As you might imagine, guilt plagued me all day long, and when Allison and I went to pick him up again in the afternoon and I felt the way he clung to me, I was almost of a mind to forget the whole thing.

Fortunately for him, I didn’t. I tamped down the guilt the next morning and swallowed hard as I helped him on to the small school bus and then waited a second, long day…and a third…and so on. Eventually, he began boarding the bus himself.

Jason boarding the bus for Sunshine

Though it took a while for Jason to feel at home at Sunshine, by his second year there I couldn’t deny that he was thriving in ways he never would have at home alone with me. The staff there was tremendous and they fell in love with the little guy. So did many of his fellow students, whether they were blind, crippled, had Down Syndrome, or were otherwise disabled. In fact, that was one of the best things about the school. It broke down barriers between the so-called “different.”

Jason's the green M&M for Sunshine Halloween party

His teachers were able to help me finally potty train him by age 4 and speech therapy helped a lot. In fact, he was beginning to speak better than most children his age. Our health coverage paid for some occupational therapy sessions, but he didn’t make as many strides there in terms of gross motor skill development. In fact, he fought it. The one great thing we got out of it were the two big therapy balls, which he and Allison then began to play with around the house.

Jason sitting on his therapy ball while watching a favorite video

Every day after he’d get home from school and eat, he’d bounce all over on the smaller of the two balls as his way of decompressing or “stimming.” (Today, he draws cartoons, instead.) As for his oral and tactile defensiveness, the most progress he made was the day they said they got him to drink half of a little carton of chocolate milk…and the one time they got him to try finger painting (he hated it).

In the meantime, I was trying to teach Allison to read. To help her with letters and sounds, I bought a Muppets software program and tried to get her interested in playing the games it included on our computer. She didn’t feel comfortable around the computer, however. But Jason did. As soon as she’d climb down off the chair, Jason would take her place. He was fascinated by all these visual cues and he loved playing those Muppets games. Gradually, I became aware that he had taught himself to read. In fact, he was doing so well academically at Sunshine that they finally had to “exit” him from the school early because he no longer qualified as “communicatively handicapped.”

I put him in a regular pre-school for the remaining 4-5 months, which of course only met three days a week from 9 am to noon. He did fine there, but he really missed Sunshine and he didn’t make any new friends.

By the fall of 1999, he was reading at an advanced level. This was confirmed by Ms. Bouton, his assigned Kindergarten teacher, when she met him before the start of the school year. She met with all her kids before the first day of school to test their reading and math levels, and when she brought Jason out after testing him, she asked, “Who taught him to read? Did you?” I explained about the Muppets program and said he’d really taught himself, though I had always made it a point to read to both of my children every night. She informed me Jason was already reading at a first or second grade level.

I remember taking him back home that day and wondering, Do I have a little genius on my hands?

For that reason alone, I made another fortuitous decision: to get involved immediately in our school’s PTO. After all, if I had a gifted child, I wanted to be sure he was going to get all the services he needed.

He made his way through his Kindergarten year relatively unscathed. After all, all the kids were new, so they helped each other out, and they got to play in their own protected playground. They enjoyed Jason despite his little quirks because he was always well behaved. He even became popular in his own way. The other kids were entertained when he’d perfectly re-enact scenes and songs from videos he’d seen.

Ready to read a story for St. Patrick's Day in Kindergarten

But it wasn’t just the children who were charmed. The teachers and staff at his elementary school took to him as quickly as had those at Sunshine. He’d think nothing of correcting Ms. Bouton in a matter-of-fact way if she happened to misread something aloud to the class, and rather than be offended, she’d be amused.

By the end of his Kindergarten year, Jason had made several friends and I was in line to be PTO Vice President in the fall. In addition, I was becoming good friends with the school principal. As I saw it, I would be getting my little boy wonder ready for possible entry into the school’s GATE program for the gifted.

Actually, we were heading toward something else entirely. A new diagnosis.

On Monday, I’ll post about Jason’s pivotal First Grade year.

 

Originally posted 2012-04-13 12:21:21.

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.

A New Phase of Education for Jason

Present word count of WIP:  57, 414

Strangely enough, Jason’s elementary and secondary education were both marked by newspaper coverage.

The first was The Press-Enterprise newspaper back in Riverside (a decade before they had an online version), when he attended Sunshine Early Childhood Center:

The latest was his inclusion by the online edition of The Tri-City Herald in their slide show of Richland High School’s graduation ceremonies. It’s one of my favorite pictures of him because he is simply beaming!

Jason gets his high school diploma, graduating Magna Cum Laude!

Now, he begins the next phase of his education as he transitions into adulthood.

First, this past Sunday he was sustained by the general membership of our stake (equivalent to a Catholic diocese in our church) to receive the higher priesthood and be set apart as an Elder. The actual ordination will probably take place in early July before his sister leaves on her mission. This will help him prepare to serve a mission in our church soon after he turns 19 in December.

In the meantime, however, he plans on beginning college studies in the fall. BYU-Idaho offers a new online program, by which those with learning/social disabilities like Jason can learn the social and study skills they will need to succeed in college courses. Called the Pathway Program, it offers weekly skill-building meetings at the local LDS Church Institute and some college prep courses. Once he is accepted into the program and has completed three semesters satisfactorily, he can be enrolled online with BYU-Idaho to pursue the degree of his choice.

He meets for his entry interview tonight, forty-five minutes from now. I promise to add an update, detailing how the meeting went (or as much as I can get out of him about it, anyway). Wish him luck!

If all goes well, he’ll begin attending Institute next week and then the Pathway courses will begin in September. The terrific thing is that I believe he’ll be able to continue his studies while he’s serving a local service mission for the Church beginning in January!

Now, if we can only figure out how to occupy his time this summer, besides helping him try to find a job. I have a few plans, but I’ll write more about them in a couple of weeks when I next post about Jason.

In any case, I’m looking forward to my son’s educational achievements in the future. Perhaps he’ll even make the newspaper again!

Originally posted 2012-06-15 06:00:10.

Jason’s Future

Present word count of WIP:  54,620

Today is the last day of Autism Awareness Month…this year. Of course, it comes around every April and who knows what Jason will be up to at this time next year?

Jason in his Senior Picture at one of his favorite haunts–Barnes & Noble

As I said yesterday, he’s planning on serving a local service mission for the Church beginning in January after he’s turned 19. That means he’ll still be living here with us and going to his assigned work area every day except Sunday, I imagine. You see? I haven’t even researched all the options thoroughly yet. I know that Alane’s son worked at the Bishop’s Storehouse, for example, but I’m not sure if that was five or six days a week.

Until then, Jason is planning on beginning the Pathways Program offered through BYU-Idaho. It’s perfect for young men and women who have difficulties fitting in socially or being independent, because it allows them to do most of their learning online while still gaining opportunities for socializing at their local Church Institute. An ACT score wasn’t required (thankfully!), and once he succeeds in completing three quarters, he can then take any courses he likes  that are offered by BYU-Idaho online.

He’ll start attending Institute twice a week this summer and then begin his first quarter in September. The mission will interrupt his studies come January, but he can pick up where he left off afterward, and finish the two remaining quarters.

We’re hoping he’ll be able to find some kind of employment this summer, as well. Not only that, but he needs to learn to drive. He’s been fighting it, but it’s a skill he absolutely needs for his own independence. I’ll also be working with him on a few other life skills this summer, including finally learning to cook for himself.

From this point on, I plan to blog about Jason’s progress only twice a month (probably every second and fourth Friday) in order to document his entry into adulthood and independent living. I appreciate all of you who have read and followed his journey thus far, and particularly those of you who have left comments either here or on Facebook.

One last point: Jason wouldn’t have done nearly as well, had we not had the support of friends like Lisa Gonzalez (a good friend and daycare provider back in Riverside, CA who treated Jason like one of her own), the terrific staff and faculty of Sunshine Early Childhood Center and Ben Franklin Elementary School in Riverside, the wonderful Riverside Children’s Theatre, so many friends in Orangecrest Ward, the very helpful staff and faculty at Enterprise Middle School and Richland High School here in Richland, WA (particularly Mr. Kopf), the Richland High School Choir, and the many wonderful members of Hill View Ward.

Three young men, in particular, made a defining difference for Jason once he started high school: Braden Nelson, Casey Hare, and Jackson Ostler.

These three were some of the most popular LDS seniors at the school and they took Jason under their wing and loved him and accepted him. Because they did, others did, too. And Lily Harris invited him to one of the formal dances, where they both had a wonderful time. I hope any teenagers who might be reading this will take a lesson from this. You CAN make a huge difference in someone else’s life.

Lily is now studying at BYU-Idaho and all three young men are valiantly serving missions right now in Mexico and South America. They are due to return this summer and I know Jason can’t wait to welcome them home.

 

Originally posted 2012-04-30 17:34:54.