“Wednesday Writer” – Tracy Winegar

As I wrote last week, Tracy Winegar and I share a couple of things in common: we both have sons with an autistic spectrum disorder, and we both wrote novels about it, though she set hers, KEEPING KELLER, in an earlier time period long before doctors really knew what to do about it.

Tracy WinegarME:  What was it like growing up in Indiana, and who were your earliest and/or strongest literary influences? Also, how would you compare the Western and Midwestern mindsets, and where do you come down between the two?

TRACY:  Growing up in Indiana was not a bad way to spend my youth. I had a fairly carefree childhood. I was the third of eight children. My mom was a stay at home mom. She was very fun and had a great sense of humor. My dad provided for our family. I had nothing but sisters until I was about five years old, when my brother was born and then two more sisters before my last sibling, another brother, was born. I grew up in cornfields and with a small town mindset. There were very few LDS people in our area, so I knew from an early age that I was very different, at times excluded because of it. Hard work was important and I began working part time when I was fourteen.

OLYMPUS DIGITAL CAMERA(Tracy as a teenager)

I spent summer vacations on my grandparents’ farm in Tennessee. When I think of my favorite places, that is one of them. It was quiet, and beautiful, and simple. Very few distractions gave me and my brothers and sisters the opportunity to use our imaginations and spend time in the great outdoors. My grandmother was a great storyteller and we loved to sit with her and hear her stories of when she was growing up and how she met Grandpa and fell in love.

I enjoyed a lot of different activities, but I loved drama and I loved writing. Each year they had a competition called the Young Authors Competition. I entered every year and always placed. (So, the talent showed itself early!) The prize for winning was that you were able to attend a lecture with a real life author. That was when I got to hear some of the great authors of my youth speak, one of which was Judy Blume.

Judy Blume(Judy Blume)

When I was young I loved to read Pippi Longstockings, Island of the Blue Dolphins, Little Women, Calico Captive, and The Witch of Blackbird Pond.

As I got a little older, one of my biggest influences was a teacher I had my sixth grade year. Mrs. Meier-Fisher. She had us read some really beautiful literature and she gave us some great writing assignments. I was on cloud nine when she read one of my pieces to the class as an example. (I’ll bet!) She had us read some of the great Hoosier writers and I fell in love with Gene Stratton Porter.

Gene Stratton Porter(Indiana poet and novelist Gene Stratton Porter)

One of my Grandma Beaty’s favorite books was her novel, A Girl of the Limberlost, and when I read it I was in love with it too. I also really loved James Whitcomb Riley, another Indiana author who had become a great poet. In seventh grade I read Gone With the Wind and loved it as well. I discovered that anything historical was right up my alley, fiction or non-fiction alike.

James Whitcomb Riley(James Whitcomb Riley)

I am still very much a Midwesterner, although I have lived in Utah for the past twelve years. I like things simple and uncomplicated. I love being home with my family as much as possible, and I miss the green landscape and beautiful stretches of empty land. I would love an acreage, but land here is very expensive and every space is taken up with houses. Gone are the cornfields and soy bean fields that stretched for miles.

ME:  When did you first know you wanted to be a writer, and what brought about that realization?

TRACY:  When I was a kid, I loved paper. Before I could even write I spent a great deal of time “writing” cursive loops, although none of it was actually words. In third grade I wrote a tall tales story for a school wide competition and was hooked when I was one of the winners.

I did a lot of creative writing in high school, but then I got married and had children and didn’t have a lot of time for writing. When I turned thirty, I told my husband that it was a dream of mine to write a novel and so I began and I kept at it and somehow managed to finish the thing. That was my first novel KEEPING KELLER.

Keeping Keller 1

ME:  Why did you move to Utah at 19? And if it involved college, how did your college studies impact the kinds of things you write today?

TRACY:  I moved to Utah because I wanted an adventure. I moved to Utah because I wanted to see what it was like to be surrounded by people who were like me and not be the odd man out for once. (I know exactly what you mean. That’s why I went to Utah after high school in Beirut.) It was fun to be able to go to parties and to have social events where I knew I would be welcome. I enjoyed dating and being independent. I missed my family very much, but also was happy to be experiencing new experiences.

ME:  What type of writer do you aspire to be, and which writers have influenced you the most?

TRACY:  My goal is to try and make people feel something when they read my writing. To invoke a reaction, to get people to relate on some level to the story or the characters would make me a happy character.

I love classic literature and I enjoy historical fiction. It’s hard to say who has influenced me the most, because I have read so many quality books by so many awesome writers. My favorites are the books that leave me feeling haunted… I just can’t forget the characters or the storyline. As I stated before, I love A Girl of the Limberlost, but I also loved Gone With the Wind and A Tale of Two Cities. More recent books that I enjoyed were The Forgotten Garden and The Secret Keeper by Kate Morton.

Kate Morton(Australian author Kate Morton)

While many great authors have inspired my work, I also attribute my writing style to the themes I know best. Motherhood, marriage, and my relationships with friends and my family (thanks Mom and Dad) are themes that are always reoccurring in my writing, because that is what I know best.

(And it shows.)

ME:  Strangely enough, I’d forgotten we were both Whitney Finalists in 2008 in the General Fiction category for our first novels, KEEPING KELLER (yours) and THE RECKONING (mine). (That’s why your title sounded so familiar to me.) As an awards program, what do the Whitneys mean to the LDS writing community in general and to you, personally?

Whitney Awards

TRACY:  I think it’s great that there is a forum for LDS writers. I thought it was a wonderful honor and was very excited to be involved when I was a finalist. It is difficult to be seen or stand out in a field where anyone can publish and the market is saturated with books, both good and bad. This gave me the opportunity to be seen, which is any author’s dream.

(Amen!)

ME:  We’ve both written novels based on our personal experiences with an autistic son. Please tell us a bit about KEEPING KELLER and how much of your son comes through in the book. Also, I’d love to hear the story of your son’s diagnosis and your reaction to it (and post a picture of you with him, if possible).

TRACY:  The character in KEEPING KELLER is nothing but my son. Many of the experiences I wrote about in the book were based upon things that had happened to me. It was very personal. I love the story, but do feel it could have been better with more editing. However, that was a very honest look into the life of a mother dealing with autism, as well as the difficulties she would have encountered during that time period (the 1950s).

I had it much easier than Beverly, because I was able to get help and learn how to work with my son. When he was young, our family life was very complicated and difficult. Thankfully he has gotten a little better and a little better, until we are now in our own comfortable normal. He throws us some curve balls every now and again, but I don’t feel as though I might have a nervous breakdown a majority of the time any more.

OLYMPUS DIGITAL CAMERA(Tracy with her son, Luke)

My son was my second child. I first had a girl who was very smart and very vocal. He began to develop normally until about eighteen months old. We noticed that the few words he had acquired seemed to be lost. He had odd behaviors that we couldn’t quite figure out. A lot of people told me that it was because he was a boy and that boys were very different than girls. I knew instinctively that something was not right. I persisted in trying to get him help until he was diagnosed with Autism when he was two years old. At the time, I was a month away from having my third child, another son.

(I imagine that made you extra nervous.)

One of the reasons we moved back to Utah from Iowa was in order to get my son into the Northern Utah Autism Program. There were many difficult and sad years. It is hard to come to terms with the fact that your child will never be normal. We love him, but Autism is such a devastating thing to live with. We have had many bad experiences, we have been judged and treated badly, but we have also had a lot of compassion and some true friends to come of it.

(That’s a blessing, indeed. It sounds like your son’s on the more severe end of the spectrum. You and your husband must be twice as strong and even more patient.)

Sometimes I see boys his age and think “He would be doing this” or “He could have done that” and I feel sad. But then there are times when I see boys his age and things they are doing and I am very grateful that he is innocent. I will never have a missionary, a football star, see him graduate, or go to college, or get married. But I will always have Santa Claus and the Easter Bunny and that will always fill my life with the magic of childhood.

(How true!)

ME:  Your second novel, GOOD GROUND, came out last year. What led you to write this story and what are its main themes?

Good GroundTRACY:  I wrote GOOD GROUND based on my love of my grandparents’ farm. I loved the setting and the time period, which was when my grandparents courted and fell in love. I had a deep commitment to telling the story of a man who was what he was because of his rearing.

I like to think that we have the power and ability to change the destiny of children who seem to have no future. I work with children on a daily basis, mine and many others. I see such great potential, but I also, at times, have seen children whose potential has been robbed of them by the adults in their lives and the examples they have set. There are more than a few that I have daydreamed about rescuing, taking into my home and raising as my own.

I also liked the idea that nothing is coincidence, things happen for a reason. The whole analogy of farming tied in so perfectly with the themes of work, family, and investing in something that will produce results. I think the thing I am most proud of is the change that you see in the characters from the beginning to the end, especially Clairey. Interestingly enough, she is someone that many women have related to, which makes me very happy. I love the fact that the love story is very real, based on mutual respect, an established relationship, hard work, and sacrifice.

(Sounds good. I’m going to have to check it out!)

ME:  Are you an organic type of writer when it comes to the process, or do you prefer outlining, and why or why not?

TRACY:  Very, very organic! I always have an end in mind, but I rarely outline. I am far too unorganized and my life is way too unpredictable for me to keep up with planning it all out. I’m not sure if that is beneficial or harmful. I could probably get a lot more done if I were able to outline, but then too, I am open to different impressions and ideas as they come to me and have the ability to be somewhat creative because of my oddball style.

(Yet one more thing we have in common…)

ME:  When do you do your best writing and what are you working on now?

TRACY:  I am definitely best writing in the evening, but I try and write whenever I have a free moment.

Right now I am trying desperately to finish a trilogy set during the Civil War. I have successfully finished the first two novels and am about 2/3 the way through the last. But the last one is KILLING me! Hopefully I will be able to complete it this summer. (Fingers crossed.)

ME:  Finally, I’m of the belief that a writer’s space is crucial. When you consider the area that you use to write, what five things stand out about it that makes it uniquely yours. (And I must have a picture.)

TRACY:  I wish I could say I have a space of my own. I do not. I write where there is quiet. Sometimes that is my dining room table, sometimes my bedroom, sometimes outside on my porch, or sometimes my lunch break at work.

I dream of an office with large open windows in a restored older home. Someday I may actually have that space. Right now I make do with what is available to me.

(Everyone…order Tracy’s books and spread the word so she can afford her own writing space!)

WritingSpace(Her temporary space at the dining room table)

Tracy has a website and a blog, where you can learn much more about her and her writing (and she’s posted lots of pictures on her blog). Her books are available on Amazon.

I only have two more weeks to go in my Wednesday Writer series because after July 2nd I’m putting it on hiatus in order to complete some exciting projects during the rest of the year. So be sure and check back next week to read my interview with Theresa Sneed, who’s recently released Book 1 of a new YA fantasy series.

Theresa04022014-285x300

Originally posted 2014-06-11 01:00:59.

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.

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.

Jason’s First IEP

Present word count of WIP:  52,346

After all of his testing by school officials, a date was scheduled for Jason’s first IEP (Individualized Education Program). This is a regular meeting (at least annual) at which parents and school officials (teachers, special ed and/or resource specialists, school psychologists, etc.) get together and agree on how best to meet the special ed student’s academic needs within the parameters set by the law and district policies.

I’d read online all kinds of horror stories about these IEPs. Generally, it seemed to be a bargaining process and the student often ended up with the short end of the stick. Fortunately, in our case, I was now slated as President-Elect of the school’s Parent Teacher Organization and I already got on well with the Principal. In fact, Ms. Aklufi set aside time so that she could attend the IEP and make certain Jason got what he needed.

We all agreed that, other than certain speech difficulties (having more to do with understanding idioms than being unable to make certain sounds) and a definite defecit in understanding math, Jason should stay mainstreamed. That is, he would be pulled out of his regular classroom only for math plus a couple of speech therapy sessions a week. Those speech therapy sessions turned into social skills training, as well.

I believe that another reason that first IEP went so well was due to my preparation. In advance, I compiled a report on our son that reviewed the history of his physical, emotional, and social development. In fact, I’ve been using that report to help jog my memory for these postings. Included in that report at the end was a detailed listing of many of his quirks and idiosyncrasies up to that point. In other words, anything that seemed to me to stand out as different from the “norm.” I’ve decided to share that list here over the next several days. I broke it down into six different areas: Senses, Communication, Motor Skills and Movement, Social Interaction, Obsessions/Preoccupations, and Routines.

I’ll begin today with Senses and Communication. (Keep in mind, these were up through his First Grade year. Some of these may have been mentioned already in earlier posts.)

Senses

  • Medicine and food that most kids can ingest will make him gag.
  • I’m assuming that the reason he won’t even try some of the foods we eat is due to their look and smell. The other night when we were eating chicken from KFC, he complained aloud, “Your food smells!” He’s eating Eggo pancakes now, and a couple of times when the store was out of them and we had to buy the store brand or another brand, he wouldn’t even try them simply because they looked a little different. He won’t try our home cooked pancakes either, probably because they don’t look as evenly cooked as Eggo pancakes.
  • When I have forced him to try something new (my only successes have been apple, a baby carrot, and a tiny piece of turkey…I had to really bribe him for those), he takes forever eating the smallest bite, chewing and chewing for more than five minutes.
  • He’s extremely ticklish all over his body, but if you tickle too hard he says it feels like scratching.
  • He refuses to wear certain clothes because they aren’t soft enough. I have to take the tags out of his clothes and slippers because they bother him.
  • He can’t stand getting wet when he’s dressed (we finally got him used to being in a swimming pool). If water or liquid spills on his shirt or pants, he HAS to remove that article of clothing, even if it’s only a small area of wetness. He won’t wait for it to dry. Even in the bathtub, though he’ll let us pour water over his head, he doesn’t seem to like getting his face wet and wants it immediately dried as soon as it’s been washed and rinsed. As a toddler, he cried and cried if we ran carrying him through the sprinklers to have fun in our swimsuits on a hot day. This past year, he finally ran through the sprinklers on his own and seemed to enjoy it. But he has always disliked (and still does) sticky stuff like glue.
  • As a toddler, he hated walking or sitting on the grass if it meant bare skin was touching the grass. He also hated walking barefoot on sand. Now he’ll go barefoot on sand (and enjoys playing in it even to the extent of lying down in it and making angels), but still doesn’t like the grass as far as I can tell.
  • He has always hated loud noises (like the vacuum cleaner, ceiling fan in the bathroom, hair dryer, etc.) He’ll tolerate the vacuum now but still tries to avoid being in the same room when I’m vacuuming. Much as he loves Disney movies, we’ve rarely been able to get him into a movie theatre because he can’t take the volume of the sound, particularly during the previews.
  • When he was younger, he loved staring at a light or at the sun till we broke him of the habit, convincing him it was bad for his eyes.
  • At around the age of three, he was fascinated with the dust particles that showed up in the ray of sun coming in through the living room window. He’d stare at them for lengthy periods and even tried playing with them (running through them and turning to look at how they moved in response).

Communication

  • He taught himself to read between ages 3 and 4, and is now reading at a 2nd and 3rd grade level, seeming to comprehend much of what he’s reading.
  • Despite his high reading level, he still confuses the meaning of some words such as hot and cold, or today and tomorrow and yesterday, or on, or before and after.
  • He reads aloud like an adult, with proper inflection and expression.
  • He has difficulty responding to general or vague questions such as “What did you do in school today?” or “What did you learn at Saturday Class (Riverside Children’s Theatre)?” His usual response is “I don’t know” or “Never mind.”
  • He’s writing well as far as forming the letters and words and constructing sentences. He also doesn’t seem to have difficulty writing answers to questions (unless the question is something like “What is on the hat?” because he doesn’t understand “on”). But he can’t seem to make up his own stories, even if given a topic or idea. He’ll just say, “I don’t know what to write!”
  • Any kind of subtle sarcasm goes right over his head. He takes things literally. If he asks me a question and I say, “Wait a second,” he immediately asks the question again. (I don’t know if this applies, but I’ll never forget the night his father and I were trying to convince him to try eating some chicken and he looked at us, deadly serious, and responded, “I don’t eat animals.” He’d had no exposure to vegetarians up to this point, so it was as if it came out of left field…another expression he wouldn’t understand.)
  • Often, he will ask me a question, I’ll give him an answer, and then a few minutes later he’ll ask the same question again (sometimes two and three times). For someone with as phenomenal a memory as he has, it’s amazing that he can’t remember what I just told him…so either he needs repetition to remember, or he isn’t paying attention to my answers.
  • For the most part, his memory is phenomenal. He’ll see a video once or twice and be able to quote whole sections from it…the same with songs he hears…IF he’s really paying attention. Not only can he quote it verbatim, he mimics the voices and accents. By age 3, he was mirroring everything Julie Andrews was doing, singing and saying in “The Sound of Music.” The same with Mulan in the Disney video. He has no problem repeating any Italian phrase I tell him, complete with accent. His latest such feat in mimicry was doing Mrs. Potato Head and Tour Guide Barbie in “Toy Story 2″…and Linus in “A Charlie Brown Christmas.”
  • He’s not watching as many videos lately (spending more time on the computer instead), but out of nowhere at the dinner table or in the car or at the store he’ll say some little snatch of something that may have nothing to do with what we’re doing or talking about. So I’ll ask, “Who says that?” or “What’s that from?” and invariably it’ll be some Disney or cartoon character or a quote from some video or computer game he’s watched or played…and not necessarily recently (he may not have watched that show for over a year or more).

Perhaps the best thing about that first IEP was my husband’s response to it. He finally began to take Jason’s diagnosis seriously, particularly as he saw that school professionals were doing so. He has, since then, become Jason’s strongest champion and supporter.

Tomorrow, I’ll cover Jason’s differences in Motor Skills and Movement, as well as his Social Interaction at age 6.

Originally posted 2012-04-23 20:44:26.