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.

One Chapter Ends, Another Begins

Present word count of WIP:  56,872

Jason before the Graduation Ceremony

He’s done. He graduated. He walked with the Class of 2012 on Friday evening, and received his fancy diploma holder (minus the actual diploma, which will arrive in the mail soon). After moving his honors tassel (he graduated magna cum laude) from the right to the left along with all the other graduates, he tossed his cap in the air.

Of course, he was careful to toss it only so far so that he could quickly and easily retrieve it. After all, Jason didn’t cease being Jason upon graduating.

It was interesting to me that I didn’t get emotional during the ceremony, though my feelings seemed to cut through to my heart like a sharp knife slicing through a doughy loaf of bread. I watched as he walked in through the honor guard of academically robed faculty toward his assigned seat to the strains of “Pomp and Circumstance.”

My eyebrow rose as he then walked straight past his row toward the front. Was he making a major faux pas? No, I realized, seeing his destination: the three small risers set up in front of the dais for the “Senior Choir.” As soon as all the seniors had entered and taken their places, everyone in the sports arena was asked to stand and face the flag as Jason and his fellow graduating seniors from Richland High’s Chamber Choir sang “The Star Spangled Banner.”

Afterward, they took their assigned seats and the welcome and speeches got underway. Two things that were memorable:

First, a young man from Egypt, one of the nine graduating foreign exchange students, surprised and touched everyone when he seized the podium for a moment to give a sincere thanks for his experience here, saying “I will never forget you.” Considering the political turmoil to which he’s returning, I am sure he won’t.

Second, in talking about success, one of the valedictorians quoted the poet, Maya Angelou: “Success is liking yourself, liking what you do, and liking how you do it.”

That spoke to me because I found that to be a measure that would work for someone like my son. So many of these graduates are headed away from home either immediately or once the summer’s over–to college, jobs, or the armed forces. Perhaps they will measure their success by the world’s standard: a degree, an increase in salary, or a promotion in rank.

In the end, however, it’s the inner measure that truly counts. How happy are you? Do you like yourself? Do you like what you’re doing and how you’re doing it?

And that brings me to the true moments of joy I felt and witnessed as I watched Jason end his high school days this past week and a half.

At his final choir concert, Jason was named “Most Inspirational” among the Chamber Choir members and you should have heard the roar of approval and cheers from all his friends. That’s when I got emotional. I think it even surprised Mr. Fryhling, his director.

Again, as I watched him with his friends after the graduation ceremony on Friday (and at yesterday’s Open House honoring the graduates at our church), I was struck by how far he had come since his pre-school days.

Jason and Cody

David and Jason

Jason greeting another friend

James and Jason

Christian, Harrison, and Jason

It was a surprise for me because, unlike elementary school where parents are allowed to hover a bit, helping out the teacher as their cover, middle school and high school are practically “No Trespass” zones (unless they happen to be teachers there, as well).

Sure, he made friends in elementary school, but they were perhaps a handful at most. And he spent time with them as much for the toys they offered as for camaraderie.

But these high school years have brought Jason true joy. Check out his smile in this picture with his friend, Harrison, for example. That is no pasted on smile. That is true happiness.

Jason and Harrison

And, in the end, that’s all that counts in my book.

I can’t be sure about what lies ahead for my son, but I know he’s already gained two things that last forever–knowledge and friendships.

Originally posted 2012-06-03 09:41:13.

Another Road Trip

Present word count of WIP:  56,674

Unlike most mothers, I never really had to do a lot of chauffeuring when my kids were younger (except for the three years they were involved with Riverside Children’s Theatre). After one year of girls softball, Allison gave it up, and Jason was NEVER interested in sports.

Then my daughter entered high school and gave one more sport a try: Cross Country. She did quite well (even competing at State), and more importantly, found a life long pursuit. In the process, I put a lot of mileage on the van and then the SUV.

In California, I drove to schools in the Inland Empire, the famous Mt. SAC competition, and even up to the well-known Clovis Invitational, all to watch her run and cheer their team on. Once we moved up here to Washington after her sophomore year, the driving continued to points east and west of the Cascades and even into Oregon. Fortunately, the state championship was held in our own backyard–Pasco.

I thought most of my driving days were pretty much over when Allison went off to college. And sure enough, I only averaged 1-2 trips down to Utah during most of her years at BYU (and one of those annual trips each year was for my benefit–a writing conference).

Allison's Graduation Picture

Then this past April hit. With our daughter preparing to graduate and go off to serve a mission, we decided we should attend General Conference as a family. One trip. A niece in South Jordan got married. Another trip. Allison graduated and went through the SLC temple in preparation for her mission. A third trip. The LDStorymaker’s Writer’s Conference. A fourth trip.

Tomorrow morning I’m heading down again, this time to help her pack up and bring everything home so she can attend her brother’s graduation. But do you think she’s staying put once she’s home? Nope. You see, there’s this half marathon she wants to run back in . . . you guessed it. Provo.

I think that’s one race I can miss, particularly because we’ll be taking yet another trip down that way in mid-July to drop her off at the MTC.

Have all these trips been worth it? Of course! Spending time with her, seeing her graduate after working so hard, seeing her so beautiful in white in the temple. Socializing with, and learning from, all my writing friends. Every single trip was worth it. And this one will be no different.

Besides, it’s helped me train for long-distance travel. Something I hope will come in handy when The Boy in the Pool comes out at the end of summer and I have to drive around for signings in bookstores and Costcos here in the Northwest and in Utah (and wherever else my publisher recommends).

But this time around I’ll be chauffeuring myself.

Originally posted 2012-05-28 17:31:54.

WOMEN OF STRENGTH by Tristi Pinkston

Present word count of WIP:  55,431 (Yay, I’m finally moving ahead again!)

One of my favorite and most revealing stories from my tomboyish childhood (I was only three at the time this occurred) was recounted by my father in his personal history as follows:

“Christmas was fun…Tanya wanted and got cowboy boots and hat, plus a gun belt and six-shooters. She slept that  night wearing everything but the hat…Later we were to learn that she had developed a belief that boys get all the toys. In their shared bedroom, Jeff’s bed, especially made for us in Athens, had large deep drawers for the toys. When they finished playing they had to put their toys away in their assigned drawers. But Tanya apparently thought this meant all the toys were Jeff’s. We didn’t know this until almost a year later. At a friend’s party in Athens, Greece, she told a guest that ‘only boys can have toys.’ This taught us that words are only one of the languages that reach our youngest children.”

I couldn’t help but be reminded of that story as I read Tristi Pinkston’s short, but marvelous book, WOMEN OF STRENGTH. As she points out so well, and in so many ways, a woman’s true strength comes from within, not from any outward “toy” like a career, job, educational degree, high-placed connection, or luxury possession. Within the LDS Church, even a woman’s calling in the ward is no indication of her real power, except in the way she fulfills or magnifies it.

She discusses the source of our strength and how it meshes perfectly with the nature of a woman. Separate chapters are devoted to our strength as wives, singles, or parents. She talks about how we are less without men and how they are less without us. In the eyes of God, men and women are equal and always have been.

We demonstrate our strength, she says, in the ways we keep God’s commandments, develop our talents, and display virtue in our lives. Most importantly, she calls on women everywhere to step forward in this age of slipping morality and take a stand for ourselves, our families, our communities, and our world.

If you ever doubted your own worth as a woman, or know a wife, sister, mother, daughter, niece, granddaughter, or friend who has, this book has strength, in and of itself, to lift the insecure soul of any woman.

Originally posted 2012-05-25 12:42:31.

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.

A More Social Second Grade

Present word count of WIP:  54,620

By the beginning of his Second Grade year, Jason had made some definite advances.

First, it helped that we had put in a pool in our backyard. We wanted to get him more used to water and getting wet. He was due to be baptized by the end of the year and we just couldn’t see how that would come about unless he had a good deal more exposure to being underwater. (As it turned out, the baptism was more than memorable. I promise to write about it later, but for now, be assured that he was baptized.) Besides, he had begun to be afraid of the outdoors (by now, we had figured out that it was all the gnats and flies and anything else that flew–other than birds and butterflies–that bothered him to the point of panic) and he needed fresh air and sunshine.

Jason pushing the raft with Allison and his cousin, Cole

As you can see from the picture above, the pool worked wonders–as long as he had his goggles. Sure, he’d still run from the sliding back door of the house and into the pool, trying his best to avoid any bees or flies, and as soon as he was done swimming, he’d run back inside again…but at least he got some fresh air and sunshine while immersed in the water. Believe it or not, he developed a tan for one of the few periods in his life.

That summer we also tried to push him regarding his food issues. We weren’t very successful, but Michael did get him to help make cupcakes one day. I’m not sure that he took a bite of one when they were done, but at least he’d cracked open an egg and dealt with getting his fingers slightly slimed with the egg white.

Jason cracks an egg to help his father make cupcakes

Another big hurdle was his fear of dogs. A visit from an old friend who had the most gentle Labrador (I think–I’m not a dog expert) proved to my son that not all dogs get excited and jump all over you. After about half an hour of watching the dog from inside the house, Jason ventured out. When the dog stayed where he was, Jason approached and softly petted his hind quarters. Still, the dog didn’t get up. So Jason began petting his head. The dog sat up at that point, but that was all. Soon, they were fast friends. (Unfortunately, the visit didn’t last long. Jason’s still uncomfortable around dogs unless they’re quiet and calm.)

Jason with my friend's dog

As Second Grade began, his social challenges had diminished in terms of being bullied or harassed on the playground. This was mainly due to his making friends with one boy–Adam–who was strong and athletic and kind of looked out for him. He continued to be mainstreamed academically, except for Math. He received special math tutoring with the Resource Specialist four times a week, and went to speech therapy twice a week.

He still had a lot to learn about getting along with his peers in terms of his words as well as his actions. In some areas, he had improved, and in others he had regressed. These were the notes I made and shared with his teacher in September of 2001:

Senses

  • He seems a bit less ticklish now…at least “soft” tickling no longer feels like scratching to him.
  • He’s quite bothered again by the feel of certain inner seams and tags in clothing…the seams in socks bother him a great deal (there are only four pair he will consent to wear at present).
  • He’s gradually getting a bit better now about dealing with a drop of water on his clothing. He put up with a small drop last week for the first time, though he tried to blow it dry first.

Communication

  • Because of current speech therapy, he’s beginning to learn what certain idioms and sayings mean, but he still takes things quite literally. Now and then, however, he appears to catch on to the meaning of an expression without it being explained to him…particularly if he’s seen it used in context in a video.
  • He’s now reading at a 4th grade level, though his comprehension is not at that level.
  • He’s beginning to formulate written sentences on his own better if you give him some parameters within which to work.
  • He’s back to watching more videos again and playing less on the computer (except on Sundays)…so we’re getting a lot of quotes from “The Swan Princess” and “Sailor Moon” lately.

Motor Skills and Movement

  • He’s doing a bit better with Legos.
  • I haven’t noticed him stemming much anymore…except to bounce around on his big ball every few days or so.
  • He was assessed for Adaptive PE and the School District Specialist found him to be on the borderline, so she recommended keeping him in regular PE for the time being (which he gets twice a week with his class…I don’t know how he’s doing there).

Social Interaction

  • He’s got a few friends now…particularly a girl in his class and Adam, a boy in another second grade class (they were in the same class last year). According to his teacher, however, he’s quite jealous and possessive of Erica, for example…to the point of being rude to any other boy who appears to be a rival. As his teacher put it, he can’t quite accept that Erica can have other friends as well as him.
  • His social interaction is still mainly geared towards other toy or pet opportunities (that is, he wants to go play at Adam’s house so he can play with his cat…or he wants to go to Becca’s house to play with her toy swan).
  • Does not do well in large, rambunctious groups, as I’ve found out during the school’s annual Skills Day and their most recent attempt at a regular grade-wide PE class…he just shuts down and refuses to participate.

Obsessions/Preoccupations

  • His current obsessions are Sailor Moon and Princess Odette (from “The Swan Princess”)…also Powerpuff Girls to some extent.

Routines

  • He no longer insists on putting the right sock on before the left one…but does stick with it for the shoes.
  • A happy addition to his morning and nighttime routines: I succeeded in getting him accustomed to using an electric toothbrush.

By the end of his Second Grade year, he was the happy little boy who had disappeared for a while at the beginning of First Grade. School was fun again and he had made some friends.

Jason with Erica. He still goes for taller women.

Jason with a friend from school

I think one of the highlights of 2002, for him (and us), was his successful “Harry Potter” Birthday Party. Six friends from school came and they all loved it…everything from the castle entry to the sorting hat to Potions Class and the Snitch game. Allison even deemed it “cool” enough for a twelve-year-old to attend.

Jason holding Hedwig in front of Hogwarts Castle

Allison and Jason at entrance to Hogwarts

Jason with his guests at the entrance to Hogwarts. (Adam is the blond boy lower left)

Jason with his Harry Potter Birthday Cake

Tomorrow, I’ll post about his baptism and his general response to church in comparison with school.

Originally posted 2012-04-28 08:00:09.

Challenges at Church

Present word count of WIP:  53,497

One of the first books I read about Asperger’s syndrome after Jason was diagnosed was a brief, fascinating autobiography entitled Asperger Syndrome, the Universe, and Everything by Kenneth Hall, a British teenager. The book gave me hope because not only was its author an intelligent young man, fully capable of communicating how he felt about everything, but he seemed inordinately interested in spiritual matters.

I realize that may have been his particular obsession or interest, but one of the things I worried over most about Jason’s disability was whether, or how much, it would impact his involvement in our church.

LDS children are raised with certain expectations, or guided toward particular milestones, if you will, from an early age. Blessed at birth, usually by their fathers who hold priesthood authority, they are taught the gospel each Sunday in Primary from the age of three. When they reach the age of eight, they are given the choice to be baptized as members of The Church of Jesus Christ of Latter-day Saints. After baptism and confirmation as members of the church, again usually at the hands of their fathers and other priesthood holders, they continue learning simple lessons of the gospel on Sundays in Primary until they turn twelve.

At that point, the girls advance into the Young Women program. The boys, now part of the Young Men program, are ordained to be deacons in the Aaronic Priesthood, and they begin attending Priesthood Meetings. (At age twelve, both girls and boys begin attending youth Sunday School classes.) One of the duties of deacons is to help pass the Sacrament to the general congregation on Sundays. When each boy turns fourteen, he’s ordained to be a teacher, at which point he helps to prepare the Sacrament and he becomes involved with home visits. Then, at sixteen, he’s ordained to be a priest. This means he may now be worthy to bless the Sacrament and even perform the ordinance of baptism.

The next major milestone for an LDS young man is to serve a two-year mission for the church when he turns 19. (Young women may serve an 18-month mission, if they choose, once they are 21.) In preparation for the mission, the youth, once deemed worthy, enters the holy temple to make certain sacred covenants with the Lord and to receive necessary instruction.

The last milestone is a temple marriage, binding for eternity, not just this life.

Given all of this, you might well understand my concern about my son. Would he develop enough of a love for God to want to pursue all these goals? Would he gain a testimony? How much would he be able to love and serve others?

It can be difficult for those with an autistic spectrum disorder to empathize because they are so caught up in their own world. There’s a whole theory of mind problem, about which scientists have done experiments, proving that it’s nigh impossible for these children to put themselves in another’s shoes.

This is why that autobiography gave me so much hope.

So we continued to take Jason to church every Sunday and I helped him prepare and give talks in Primary. We went to all the ward activities, but usually couldn’t stay the whole time because the noise and numbers of people would get to him after a while…or if it was held outside, our stay was even shorter. Michael or I would take Jason home while the other remained with Allison.

Jason and I on his baptism day

By the time he turned eight, most of the adults in our ward knew he had been diagnosed with AS or at least that he was a bit “different.” I was nervous about his baptism. He enjoyed swimming in our pool, but I kept thinking we ought to borrow one of the white baptismal outfits and let him try it out in our pool to get used to the feel of having wet clothing on. We never did, though.

We got to the day of his baptism. In our stake in Riverside, CA, they would have one service for all the children being baptized on a Saturday. Because there were four scheduled to enter the waters of baptism that day, and so many had come to share in the experience, we had the service in the Stake Center chapel. Jason, who had a beautiful boy soprano voice, had volunteered to sing a solo, “When Jesus Christ Was Baptized,” and he did it perfectly. Then we went back to where the font was.

Seeing the font full of water, he began to get nervous and elected to go last. The longer he had to wait, the more nervous he got. When it was his turn, it was all Michael could do to convince him to step out of the Men’s changing room and step into the water. It must have taken a good ten or fifteen minutes (though it seemed longer) of hearing his high-pitched voice saying, “No, no…I don’t want to!” as Michael gently tried to convince him it would be all right.

At about the moment the Stake President, who was there, was ready to call it off and give us permission to baptize him later in our backyard pool, Jason and Michael finally came out and took the first step down into the warm water. It took another five minutes to get him to take the next step. As the water begin to soak through the bottoms of his pant legs, he said, “It feels funny. I don’t like it.” He almost turned around again, but somehow Michael got him to step all the way down, then quickly baptized him. I can tell you, practically everyone in the congregation felt like cheering at that point (particularly the Stake President).

One milestone down.

We had a few more years to breathe before the next one. (I’m not even mentioning the Boy Scout program, which turned out to be a total wash, as far as Jason was concerned. He stuck it out with Cub Scouts and Frank Gonzalez was a terrifically patient Webelos Leader. But he couldn’t stand the camp outs once he became a Boy Scout.)

The real challenge at church was his peers, but I can’t really blame them, looking back now. I should have done the same thing with them that I ended up doing with his classmates at school in fifth grade.

When his fifth grade class began studying the brain, I saw a golden opportunity to nip a growing problem in the bud. Up until then, his classmates had been pretty supportive, but in fifth grade the teasing was beginning again. One day when Jason had had a particularly hard time of it, he asked me why he felt so different from everyone else.

This was the day I’d been waiting for. All the experts had advised not telling your child about his diagnosis until he seemed ready for it. I knew he was ready. So, Michael and I sat down with him and, using a simple book I’d found that was written on a child’s level, we told him about Asperger’s syndrome. I’m not sure how he took it at first, but once I arranged to give a special presentation about it to his fifth grade class, he began to feel almost empowered in a way. Another class sat in on it, as well, and they were all enthralled. Suddenly, they understood why Jason behaved the ways he did and they no longer made fun of him. Instead, they stuck up for him.

If only I had insisted on giving that same presentation to his peers (and their parents) in our ward. It would have saved a lot of heartache, I think.

In any case, when Jason turned twelve he was ordained a deacon. He seemed to be the littlest deacon up there passing the Sacrament, but they were kind and gave him an easy route to remember.

Some eight months later, we moved to Washington and, as I said before, into a ward that already knew their way around Asperger’s.

Are there still challenges? Sure. He still hates Boy Scouts and camping. He’s grown shy in front of an audience, so he has yet to give a talk or bear his testimony (though he came close) in Sacrament Meeting. He’ll sing in the choir, but refuses to sing a solo even though he now has a beautiful bass voice. He goes to the temple with the youth to do temple baptisms, but only does the confirmations.

But as a priest now, he blesses the Sacrament with sincere power and authority. And he accompanies his father on home teaching visits, even giving the lesson now and then.

And in January, after he’s turned 19, he plans on serving a two-year local service mission.

Who knows? Perhaps a temple marriage yet lies in his future.

Only Jason can answer the most important questions about how he really feels about God and Jesus Christ and his relationship to them. All I know is that he’s come a long way spiritually from that little boy of eight who didn’t want to come out of the changing room and step into the water.

 

Originally posted 2012-04-29 20:42:24.

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.

Obsessions, Preoccupations, and Routines

Present word count of WIP:  53,060

One of the main symptoms of Asperger’s is some kind of obsession or preoccupation with a particular subject or object or topic. For some, it’s trains. They can tell you all about every kind of train ever built. For others, it’s the Crimean War. Again, they can talk for hours about what led to it, where the battlefields were, etc.

With Jason, I had a hard time pinning down his particular obsession. He tended to fixate on a few particular videos, toys, books, computer games, or magazines (which were often related to a show or two with which he was obsessed). Looking back now, I’d have to say that, for him, the overarching obsession was Disney and it continues to this day.

At the time I compiled this list, however, I would have pegged it as media and media-related objects or toys, though there were other fixations:

Obsessions/Preoccupations

  •  Anytime we go somewhere in the car, he has to take one or two small toys with him. He used to have to take them into wherever we were going–the store, the mall, church, a house we were visiting–but we’re gradually weaning him by making him leave them in the car.
  • His latest obsession is the Powerpuff Girls and that’s all he will draw (and his drawings are spot-on, by the way). He’ll draw them on any paper…even drawing them into totally unrelated coloring books. It’s as if they have to be a part of his world.
  • Early on, at ages 2 and 3, he was fascinated with globes and, later, maps.
  • He knows all the planets and is fascinated with the stars and flying.
  • Anything Disney. He devours any Disney catalogue that comes in the mail. He loves all Disney videos and tapes. He loves the Disney Store and Disneyland, but he won’t go on many of the rides. He’s really only interested in the characters.
  • Lately, anything Lego…including Lego catalogues. He actually prefers Legoland to Disneyland now because it’s less crowded and the rides aren’t as scary. He LOVES his new Lego Island CD game on the computer, and he can’t wait to get his promised Lego Train Station at the end of next month.
  • He can easily spend 2-3 hours on the computer if I let him. He had an early fixation on “My First Encyclopedia” and still quotes often from it.
  • He had a “Sailor Moon” fixation based on the videos, but got teased a lot for singing the theme song at school and acting like Sailor Moon, so he doesn’t do it anymore.
  • He loves Barbies and Polly Pocket toys (mainly because there’s lots of pink–his favorite color–and because the latter are so small…he loves small toys).
  • He used to dress up in his sister’s dresses to re-enact favorite scenes from Disney movies (he always wants to play the female lead)…doesn’t do that as much anymore.
  • He used to line up his smaller toys a certain way on his nightstand (as many as 15 different toys or figurines). He also used to be more obsessed about putting toys away in a certain order or way.
  • His current obsessions seem to be Powerpuff Girls and Legos.
  • If he watches a video or movie on TV he HAS to watch the whole thing, particularly the credits (he was already into credits at a very young age). If the video gets interrupted or paused, he won’t pick up where it left off. It has to be rewound and watched from the beginning in its entirety. It’s the same with a book, though he’s not as inflexible with an interrupted book.

I wasn’t sure, at times, where his obsessions ended and his routines began because he could be so obsessive about routines. Early on, Jason seemed to want particular routines that went beyond the norm. Indeed, the routines could become very complex as they developed.

If we did something one way, and he accepted it, then he wanted it that way every time thereafter. If we happened to unsuspectingly add something to the routine, and he accepted the addition, then the next day it had to stay part of the routine. This would go on in some cases in such a way as to make the routine ridiculously convoluted after a week or so:

Routines

  • Food Routines:  Cheerios had to be served in a bowl from an early age…then he’d take 5 or 6 out and line them up and eat them one at a time until it was time to line up the next set of 5 or 6; French toast and bread had to be served with the crusts off, one slice on top of another, then cut vertically and horizontally four times each way so you ended up with 16 small pieces on top of 16 other small pieces (he wouldn’t eat them presented any other way); Vanilla ice cream will only be eaten if you present it to him with the spoon already in the ice cream (he has to have the spoon first and he only eats it from the bottom of the spoon, licking it off); Banana peels at first had to be cut off halfway down because he couldn’t stand the peels hanging down over his hand (we finally broke him down to accepting them hanging as long as there were no stringy parts hanging separately); Eggo pancakes have to be heated in our microwave exactly 1 minute and 20 seconds, then taken out and cooled for exactly 4 minutes (when they’re brought to him on a plate, he won’t eat them unless and until the three pancakes are positioned to look like Mickey Mouse; upsetting his food routines really causes him to lose control…it’s really the only time he throws any kind of mini-tantrum.
  • Morning routine: This has gotten more relaxed lately, but he still insists on putting his right shoe on before his left shoe (same with socks). He tends to want to wear some of the same clothes and it’s really hard to get him to wear some new clothes, particularly when they are darker in color. Also, once it’s warm enough to wear shorts and he finally gets into wearing them, then when fall comes and it’s getting cooler again, it’s hard to get him switched back to wearing long pants.
  • Bedtime routine: After scripture reading, family prayer, and a bedtime story, he won’t go to sleep until both my husband and I have taken turns saying, “Good night, sleep tight…” then he says, “Don’t let the bedbugs bite” and we say, “That’s right,” touch his nose and kiss him (plus lately I also have to blow kiss him on the neck). Something that was added to his routine later and remains to this day (unlike the bedtime story, the sayings, the touching on the nose, etc.) was a humidifier when he got sick. He liked the noise so much that when he got better he still insisted on it. We’ve replaced that today with an air purifier.

At the conclusion of my list, I wrote:

“Despite all his idiosyncrasies, Jason’s a very well-behaved little boy who sometimes seems to talk like a little man. The most he’ll do when he gets mad is grit his teeth (though his teacher says at school he’ll shake a bit and pump his arms up and down), go to his room, and slam the door. But he always says, “Sorry” later, forgives and forgets. He has no stage fright and is enjoying his classes at Riverside Children’s Theatre (as he enjoyed being in “Cinderella”)…We love him so much and just want to do our best to see that he starts enjoying school again.”

Tomorrow, I’ll share his developmental update from Second Grade. On Friday, I’ll skip ahead to another turning point for him–Fifth Grade.

Originally posted 2012-04-25 17:00:20.

Jason’s Motor Skills and Socializing

Present word count of WIP:  53,057

I came across an old email sent to a PTO colleague toward the end of Jason’s First Grade year. Reading it again these many years later still transported me back to the mindset of that first year after his diagnosis:

“Two days ago when I was watching Jason on the playground I wasn’t stressed so much as depressed and kind of lost in thought. He seems so normal at times and then I catch him so obviously unlike most of the other kids…playing by himself, in his own world. After he went in to see the private psychologist yesterday, Allison asked me if I wasn’t disturbed or unhappy that he has Asperger’s syndrome…I said that, certainly, for the first few months it was depressing (without explaining why) but that I’d come to grips with it. In truth, I have moments (and probably always will) when it’s a depressing, discouraging, and unsettling realization. Anyway, the moments pass. Enough venting.

My stress lately hasn’t been so much PTO but, rather, getting my kids to all their various appointments with doctors, Jason’s psychologist, dentists, the orthodontist, etc. I probably seemed stressed the other day because I had to get Jason to his appointment with Ms. Bouton (Even though she was his Kindergarten teacher and he’s now in First Grade, she’s graciously offered to help him twice a week after school with his math, since he gets along so much better with her than with the Resource Specialist, Dr. Mahdavi…Ms. Bouton has a nephew with Autism and her brother-in-law’s niece has Asperger’s), and then hustle back to meet with Dr. Mahdavi and the District’s Adaptive PE Specialist concerning the results of her assessment with Jason. Bottom line: TOO MANY APPOINTMENTS AND MEETINGS! I’m just not used to it…but I’d better get used to it because, in a week or two, Jason will get started on Occupational Therapy twice a week for six weeks or so. Anyway, like I said before, enough venting already!”

No, it wasn’t easy, but it wasn’t nearly as difficult as many parents with kids on the autistic spectrum have it. I recall one mother at our school who had triplets, one of whom had pretty severe autism. She ended up having to institutionalize him after her divorce because by middle school he was simply too big for her to handle when he got violent.

I certainly felt blessed when it came to Jason’s temperament.

Now, on with the list of his differences in Motor Skills and Movement, followed by those in Social Interaction.

As with speech, Jason was delayed in both fine and gross motor skill development. He showed no interest in sports (I signed him up for T-ball and basketball and even gymnastics, since he was so small…but he didn’t seem to fit in or enjoy any of it) and hardly ever wants to go outside to play. That latter characteristic might mostly have been chalked up to his inordinate fear of dogs, but by his first IEP he seemed to be beginning to get over that. (Actually, he’s never really gotten over his fear of dogs even today.)

Motor Skills and Movement

  •  He’s only now getting comfortable using scissors to cut things up (this after two and a half years of pre-school, plus Kindergarten).
  • As a toddler, he had a real fear of stepping up or down off a curb (even when holding on to my hand). The occupational therapy helped here, and he will now go up and down an escalator (holding my hand).
  • He’s been described by my father as having a strange gait, walking like Hercule Poirot in the PBS Masterpiece Theatre series (whatever that looks like).
  • Halfway through Kindergarten he was finally able to ride the big trikes…but he shows no interest in his own little bike with training wheels. He is showing an interest, however, in his sister’s new scooter. (That didn’t last.)
  • He can’t pump himself on the swings and, when pushed, only wants to go so high.
  • He still needs help dressing himself (he can’t do the zipper, some buttons, or put on his own socks).
  • He avoids slides at all costs, unless they’re small slides he’s familiar with.
  • He doesn’t seem to have the strength to build with Legos himself…but we’re working on it.
  • He used to rock a lot while eating at the table until he had a bad fall. He also rocked whenever we held him in our lap. He still does when he’s bored or antsy (like at church).
  • He used to rub his thumb and index finger together softly while he read or listened to stories or sat at the table…he doesn’t anymore.
  • When he’s not feeling well or worried about something, he’ll sit or lie down and softly stroke his bare stomach (he was doing this today after school).

Jason with one of his older RCT friends

Socially, Jason at age 6 was very affectionate and loving with those he was close to (mainly his immediate family and Grandma–my mother) and could become so very quickly with others he met (like Amanda, a 14-year-old at RCT, the children’s theatre group)…generally, however, he didn’t have any real friends among his peers either at school or church.

Social Interaction

  •  Kids in his class at school are nice to him and some really go overboard to help him out in class (with cutting and gluing, etc.), but he doesn’t seem to really make a personal connection with them. I thought he was becoming friends with Drew, particularly because they started out taking swim lessons together last summer, but nothing’s really ever come of it. The only time he wanted to go to Drew’s house was because he wanted to see one of his toys. As I’ve thought about it, most of his requests to socialize seem to be geared toward getting an opportunity to play with a particular toy or item.
  • Even when he’s playing with his cousins, he’s playing more with the toys than with the cousins.
  • He seems to socialize better with adults or older kids or younger kids.
  • Generally, his social behavior seems immature for his age.
  • He’s content to play by himself with his toys, his Gameboy, or on the computer. He’ll go upstairs and read or play for hours without complaining about being bored. Unlike his sister, he never complains of being bored.
  • If he takes a dislike to someone, adult or child, he shows it readily with off-putting, rude behavior (often to the point of embarrassing us).
  • In fact, he seems to have developed very little tact despite our best efforts to educate him to be polite. He just says what he thinks.
  • He also doesn’t seem to be able to clue in to certain social graces. Hardly a day goes by when I pick him up after school that someone will say “Bye” to him on our way out to the parking lot and he doesn’t respond. Invariably, I have to tell him to say “Bye” back. There are a few people he goes out of his way to greet or say “Bye” to (like his teacher, Ms. Rios), but he’s oblivious to most.
  • If the teasing by others is subtle, he doesn’t get it and ends up laughing at himself just because the other person’s laughing. I guess that’s what he’s supposed to do, too.

Jason playing with his cousin, Cole

Tomorrow, I’ll post about his Obsessions/Preoccupations and his unusual Routines. Some of you have expressed a desire to know how he’s changed (or not) over the years. I promise to conclude by covering that development by the end of the month.

Originally posted 2012-04-24 18:53:18.