The Terrifying Blessings of Seminary and Autism

In August, our son turned 14 years old and entered high school. Just that transition alone is enough to stress out any mom – special needs teen or not. As much as I worried about my son moving to a huge school, I was more worried about his new morning routine.

Seminary.

I joined the church when I was 16 years old. My small branch didn’t have enough youth for seminary.  So the whole early morning thing – wow. The more I thought about it, the more terrified I became. Would the loss of sleep cause melt downs? Would he be disruptive in class? Would he even understand the concepts the seminary teacher discussed? Would the other kids be nice to him? Would the new schedule of EVERYTHING overwhelm him?

Yes, I am mom. And yes, I worry, worry, worry.

I talked with the stake seminary leader, who suggested we try early morning seminary first. If that didn’t work out, we could sign up to be an online or home bound student. One thing I knew though was if we did an online class, it would be forgotten between all the craziness of sports, homework and youth activities.

So we prepped for early morning seminary.

We talked about the new routine. Wrote up a written schedule with items to do to prepare each morning (eating breakfast, shoes, scriptures, brushing teeth, etc) so nothing would be forgotten in those early hours when, honestly, mom is barely functioning. Even with all the prep, I was still terrified.

But then my son surprised me. He transitioned just fine. No bumps. No “holy moly get me outta here!” Not only that, but he LOVES seminary.

My son is one of those kids who doesn’t really talk about all the things wandering around in his head. Sometimes I think he isn’t listening during family night, then a few days later, he asks me more detailed questions. Seminary is like that for him.

My son is also a cross country runner. A few weeks into the school year, he started sharing his seminary thoughts on our drive home. It went something like this – "Today while I was running, I was thinking about Nephi and . . ." 

It was the awesomest thing ever to have gospel conversations with my son. But he took it a few steps further. 

He started outlining a story about a boy who finds an old arrowhead that allows him to see Nephi, who is still working here on earth to influence youth to make good choices. There are some awesome twists and turns he’s already plotted out. How exciting!

Then he shared his feelings about the gospel through his homework. For theater, he was given a bunch of wire and asked to create something. Isaac designed a snail. Now, we haven’t seen the new Turbo movie yet, but I thought it was probably inspired by that.

I was wrong.

As part of the assignment, he had to write a paper detailing why he chose that creation and what it symbolized to him. I was astounded as he described the snail and its symbols. That the outer shell symbolizes the armor of God and how it can protect us. That the snail is a good example because it moves slow, and how that if we slow down, we have more time to think and make better choices, which he then tied back to how choosing the right gives us protection from God.

What an amazing miracle seminary has been. I love that my son is absorbing the gospel, feeling Heavenly Father’s love for him, and the power of the Holy Ghost. 

So, a note to moms and dads – it’s absolutely okay to worry about your children, but don’t let it hold your child back from exploring new things. You never know how it will help your child to grow and bless both of your lives.

Motherhood & Autism

A week ago, my middle school son with autism came down with a bad case of bronchitis. The poor guy sounded like he was hacking up half his lung - and was absolutely miserable. He stayed home from school all last week. Which means mom got the pleasure of home schooling him. And it actually was nice. There's so much I miss while he's at school all day - his questions about context he's learning, interesting comments in science and social studies. By the time he comes home and I ask how his day was, all I get is a "It was great!". I enjoyed actually being on the discovery and working hard side for a change.

It also happened that last week was a mega deadline week. I had to make a lot of decision about how to schedule my time between meeting my family's needs, checking off my work to-do list, and stay mentally together. It was quite a challenge, but somehow it all came together.

One item on my to-do list actually helped me to freak out a tad bit less. I agreed to review Motherhood Matters by Connie E. Sokol. You may remember Connie from her Autism Celebration post earlier this month. I've enjoyed her books in the past and have reviewed them here on my blog. This time, her book is a short Mother's Day gift book. The chapters are tiny, but the messages have a powerful impact. Each day, I would read just one chapter - which took less than five minutes. I found I had one of two responses.

1. "Amen! I've totally been there!" reaction, followed by a "It's so nice to have someone else admit to not being perfect, but who still enjoys being a mom."  OR
2.  I found myself thinking about the chapter's topic throughout the day, wondering how I used it in my life, what my motherhood style was like, and how I work with Heavenly Father to care for my munchkins.

Which means I spent a lot of time this past month thinking about motherhood and autism. In Motherhood Matters, I was reminded that there is no "perfect" way of mothering. Each of our families has a different make up. Some people have large families, others just one or two kids. Some families don't have any special needs, some have a mixture of typical kids and special needs kids, and I even know a few families that each of their munchkins fall somewhere on the Autism Spectrum. Each family is unique and awesome.

Connie reminded me that we each get to be the best mother for our own families AND we should never compare ourselves to the whoever we perceive as the perfect neighborhood mom. I absolutely know that I'm the mom my kids need - yet, I still fall victim to looking at my friends and their awesome mothering skills and think "Man, I wish I could be more like her." It's refreshing to have someone else remind me that my goofy family and our way of working together is perfect for us - and my style of motherhood is awesome for our family.

So, today, as I wrap up this month of Autism Awareness, I wanted to share that message with each of my readers. No matter what your family is like, YOU are the mom your munchkins need. You work hard every single day to find balance between the joyful, mundane, and stressful moments.  YOU are awesome. Take a deep, cleansing breath. And another one. Then repeat after me:

"I am a great mom!"

I want to end with a huge thank you to all the moms and dads who love their munchkins with autism so very much. Who celebrate their uniqueness, their talents and gifts, and their strengths. Who help their munchkins work on their challenges, help them take a step in the right direction . . . and never, ever give up. Each of you is an incredible blessing in your child's life. So, on behalf of your munchkins, I want to say thank you for your love and dedication to your families.

Happy Autism Awareness Month!

For more information about Motherhood Matters by Connie E. Sokol, please visit her website.

Why I Chose Autism by Katie Norman

People often ask “why” I chose to work with students with Autism.  My answer is:  I didn’t choose autism it chose me. 

As a student at the University of Kansas, I was studying biology for pre-med.  I always knew I wanted to work with children and to somehow make a difference in their lives.  At the time, I had never heard the word autism nor did I know anyone who had been diagnosed.  All I knew was I wanted to work with children. Early in my college education, I realized biology and chemistry were not for me.  Half way through my second year of college, I enrolled in a child development class and absolutely fell in love.  From there I started exploring some psychology classes.  It wasn’t until I changed majors from Biology to Human Development and Family Life/Psychology that I found my true calling.  I enrolled in some behavior modification classes and then had to pick an emphasis within my major.  I chose “Working with Students with Autism”.  I took courses that primarily focused on the autism spectrum.  I excelled in these courses and loved them. I enjoyed the readings, the assignments, and didn’t dread the tests. This was what I was supposed to be studying.

 It was then that I met my first student.  

Katie Norman with my son Isaac & his Autism Specialist, Mr. Todd.

 A foster grandmother had approached me in one of my classes. She needed some home support for her grandson with autism.  She asked me to meet him and work with him at home as well as take him into the community.  I had read about students with autism and ways to teach them but this was going to be a new challenge.  From the time we first met, I became a part of his family.  I worked with him several days a week after school.  Don’t get me wrong, he was a challenge for me and for his grandparents - both behaviorally and academically. However to watch the progress he made over time, made it all worth it.  It reinforced my belief that I was in a field I loved. I worked with him in the home setting from the time he was 8. He’s now 21 and I still keep in touch with his family.   

Although I taught this student a lot, he and his family taught me even more.  They taught me to love unconditionally, compassion, patience, and to never give up.

I graduated college, obtained my teaching certificate and a master’s degree. Then I started my career as an Early Childhood Autism Teacher.  I was in for what I thought of as the challenge of my life (up to that point).  I was a first year teacher opening up a new program with 6 students with autism and 3 peer models.  I knew how to do 1:1, but what was I going to do with 6?  It was also my first time managing classroom paras.  Yes, it was difficult at first, but it was one of the most rewarding times in my career.  I built a program for these students and got to watch them flourish first hand.  I was there writing their initial IEP‘s and talking their parents through what it would be like to send their babies to school for the first time.  I had to build trust and confidence with these parents.  I also had to be a shoulder for them to cry on for parents who recently received the diagnoses – and sometimes I cried to.  

There isn’t anything was more exciting than hearing a student’s first word or witnessing a first sign.  I videotaped these milestones so the parents wouldn’t miss out.  I witnessed many other first milestones - students using the potty for the first time, a student who could no more than sit for a portion of circle time could now lead circle time, a student who wouldn’t touch paint was now a master in art center.  These were the times that made smile.  Our moto was “Tiny steps to giant victories” and that is exactly what it was in my classroom. We celebrated each and every “tiny step”.

When I made the choice to leave the classroom—one of the hardest decisions ever—I put on a preschool graduation for my students.  At that time there were 8 identified students and 4 peer models.  The students participated in a circle time session with their parents and then was followed by a slide show of my class and students over the last two years.  There was not a dry eye in the room.  I was the worst.  I was saying goodbye to many of my first students who had come so far. Goodbye to my classroom and para educators.  Each and everyone one of these students, parents, and staff were a blessing to myself, to each other and together we learned a ton.  I will never forget my first students.  I still see some of them today as they are get ready to transition to middle school.  They have come so far. I am so proud of each and every one of them.

If you could work with people with disabilities, what area would you choose?

Katie Norman is an Autism Specialist for Olathe School District. She taught an autism preschool prior to becoming an autism specialist. She studied at University of Kansas for both her undergraduate degree and Master of Science in Special Education. She is currently taking course work through Florida Institute of Technology in Behavior Analysis. She loves her job, the students she work with, and the families she is able to support!

Autism Celebration 2012: My Experience with Autism by Sarah Anderson

Sarah and her son.

When I was in college, I needed to volunteer in a special needs classroom for a day as a class assignment. I was a little apprehensive because I had pretty much zero experience with non-typical kids. On the day of my assignment I parked my old Honda Accord on the street next to a worn two story building across the street from campus. I really didn’t know what to expect. The sign next to the road read Oakridge high school. I met up with others members from an art education class and headed for the main office. The secretary sent us to different classes as volunteers for the day.

The class I was sent to had five students. Their ages ranged from 14-17. They all had normal names and wore normal clothes. At first glance they looked like a group of normal American teenagers sitting around a large table. But they were anything but normal. They rocked back and forth, some hit their heads while others muttered strands of unintelligible words. All of them had a faraway look in their eye as though their souls we’re trapped deep inside.  They were autistic. Not high on the spectrum but so deep they hardly acknowledged my existence. The day ended with a school wide sock hop that consisted of a gathering of kids with a variety of syndromes. Teachers rocked wheel chairs back and forth, and I jumped up and down over exerting myself trying to get just one kid to move.

The next day my classmates spoke about how sad it was, how hard it was to look at some of the student deformities, and even how they would not want to teach them.  But I couldn’t wait to go back. I started volunteering on a regular basis, and then moved to a different class room as a part-time TA. I met a kid who could organize anything. I’m even guilty of deliberately messing up stuff just to keep him busy. I spent mornings taking kids out in the community. I even went to McDonald’s and helped the kids clean tables as part of work program. At the end of the year, I was on a committee to decorate their prom. 

A lot of the kids didn’t recognize me from day to day but I kept coming back. It was hard but I felt I needed to be there. I wanted to see them smile back at me. I wanted a sign that I was helping but I got nothing in return. I went back and forth about changing my major, even though I was almost done. I left on church service mission, but when I returned, I jumped back in. Nothing in the classrooms fit my schedule, so I became a lunch aide just a few hours a week, but it was enough. I loved these kids who could not reciprocate. I worked there until the school changed locations and I could not follow.

On the last day, I remember leaving the parking lot and thinking there had to be a reason I was pulled toward these kids, given three years of my life to them. I felt certain I would draw on the experience that it hadn’t been for nothing.

Two years later I gave birth to a child with Neurofibromatosis. It’s not Autism, but I use a lot of skills and patience I learned from my time at the special need high school. I draw on my experience to get through therapy sessions and IEP meetings.  My son goes to a special needs preschool where his best friends are kids on the spectrum because they don’t seem to notice he is different. 

Autism has touched my life. Serving those with autism has made me a better person. And autism has given back to me through my son.  I will always have a special place in my heart for those who are a little different.

Have you had a teaching or volunteer experience with someone with autism? If so, how did they touch your life? 

You can learn more about Sarah on her blog. 

Autism Celebration: How to Use Technology to Help Our Kids with Autism by Victoria Holt

In just the three short years since our daughter Tessa’s diagnosis of ASD, the availability of knowledge, information and resources has boomed. Books, local special education services, Smartphones and iPads, and especially the Internet have expanded the help that is available to families touched by the disorder. 

Victoria and her daughter, Tessa.

Our family has used technology in a number of ways to help us navigate the churning waters of Autism. Indeed, what would we all do without Internet search engines and especially uplifting blogs written by family members who know what we are going through on a daily basis? We have our sleepless nights and our public and private meltdowns like anyone with Autism in their family, but we have managed to reduce the number of public meltdowns with the help of modern technology. I had the good sense to marry a computer geek, so for the past eighteen years, technology has been at the forefront in our home. 

Recently, we were preparing for a trip to the dentist, and I felt prompted to bring my digital camera. I thought I could take photos of the waiting room, the dentist, the exam table and so on, and use them at a later visit to the dentist for a social story. The visit to the dentist went even better than expected, in large part because my daughter Tessa was determined to make it so. She told me before we arrived that she did not want to cry! I took photos of everything: big sister brushing, Tessa smiling, the hygienist working on big sister’s teeth and so on. The staff was extremely accommodating, and allowed Tessa to sit during the exam, rather than lie back on the chair. I recorded it all, feeling such pride and accomplishment on Tessa’s behalf. She was working so hard to not let her anxiety take over, that I had to blink back tears.  After a successful exam and many accolades, we came home, and I had these remarkable photographs of something I thought I would never see. Tessa at the dentist, happy.  

It occurred to me that I could upload the photos to our computer and look at them often to boost my daughter’s morale. As I was uploading, I thought about my blog and how neat it would be to put them on there. But my blog is about food and cooking…not really the best venue for such momentous pictures! That’s when it all snapped into place. I would create asocial stories blog for Tessa to review photos of events that she participated in, and to remember what it was like, and how she reacted, all in vivid Technicolor! 

As I recorded the dentist appointment, it occurred to me that other parents and kids might benefit from such a blog. I made the executive decision to open the blog for public viewing. I hadn’t seen anything like that in cyberspace.  

As you all know, life is hectic and at times, overwhelming. I don’t update the social stories blog as often as I would like, but it is a resource that is always there when we need it. We recently viewed the famous dentist appointment visit again, as it was time to return for a check-up. Tessa remembered the hygienist’s name, the general routine, and her younger brother enjoyed looking at the photos as well: it was an unexpected benefit because he had a check-up also. 

When I have time and the inclination, I like to photograph simple events in our lives and put them on the social stories blog so that Tessa can prepare herself for upcoming situations. It is a somewhat simple solution that has great dividends for our family. I have also used photographs to create a hands-on social story by printing them out and making laminated books that Tessa could look at again and again. In a pinch, I have simply carried my camera with me, and recorded events as they happened, and shown the photos on my camera to Tessa during the outing. It has the ability to calm her down because it gives her a slightly different perspective on the situation. Additionally, Tessa’s school teacher uses an iPad and other hi-tech devices to aid Tessa’s learning in the classroom.

 I am thankful for the prompting I received to bring my camera along to the dentist that day, because it turned out to have lasting positive consequences. I encourage other parents to think outside the usual routine and attempt to use some of the technology that is out there to provide better experiences for their child with Autism. Everyone who views the photographs, from the child with Autism to her parents, siblings and grandparents, will enjoy this alternate perspective on situations, and has the potential to bring happy memories alive again, and put a positive spin on an otherwise stressful event.

Notes from Danyelle: Here are some additional recommended apps to use on your android tablets, phones or iPads. Enjoy!

•  Model Me Going Places ($24.99) - Social videos
• Easy Kid Tokens (FREE) - Cute token economy. I personally love it!
• Easy Kid Timer (.99) - Transition timer w/ pics of next activity
• AAC Speech Buddy ($27.99) - An interactive PECS system for Android, iPhone, iPad, MAC, or your personal computer
• iPrompts ($49.99) - iPad version transition timer w/ picture choices
• ABA Flash Cards: Emotions (FREE) - iPad emotion flash cards
• Pictello ($18.99) - Create talking books for social stories on your iPhone or iPad

 What types of technology have you discovered to help your child with Autism?
 

Victoria Holt is the mom of 5.33 kids. She has had a handful of short fiction stories published in literary journals you've never heard of, and also an essay in Segullah, which you may have heard of. She loves to scrapbook and read outside in warm weather. Her daughter's ASD diagnosis actually came as a relief after two years of genetic testing and other false starts. Autism has brought her family closer together and closer to God. For some low-key social stories, check out her social stories blog http://asdsocialstories.wordpress.com/ . For some low-key recipes, you can check out her other blog: Whats4Dinner?." http://v1ct0r1a.wordpress.com/ 

Autism Celebration 2012: Girls Scouts & Autism by Dena Millet

My 11 year old daughter with Asperger’s Syndrome has been active with the Girl Scouts since she was five years old.  While she struggles with meetings and the social aspect of Scouts (especially as she has gotten older and the friendships in the Troop have become more complex), she adores activities, field trips, and going to camp.  I have noticed through the years that she blossoms in Scouting, she dives into service projects with both feet and finds her voice in public when she wears her Girl Scout Vest.  The same child that struggles to answer simple social questions from a person she does not know, wears her Girl Scout Vest, and has confidence, handling social situations with less difficulty.  She is able to work with many members of the community in setting up, managing, and following up on various service projects.

In 2011, we tried doing Cookie Booths for the first time, as when she was younger, I was unsure how she would handle working with the public in such a hectic environment.  She did very well with the booth sales and she and her younger sister earned enough through their cookie sales to pay for a weekend at camp.  We went as the only members of our troop, and I stayed with the girls.  My daughters both had been having challenges with night terrors, and the Camp Director (“Chipmunk”) was very helpful in making accommodations for the girls, putting us in the health center in the lodge so that the girls would be able to experience camp without added social stresses (and to prevent their sleepless nights from keeping other campers awake).  I was so pleased to see how much assistance we received to make camp a memorable experience for her.

We were in the middle of the dinner line on our first night when my heart sank into my toes.  We were in the cafeteria and out of the corner of my eye, I saw a girl staring at my daughters.  Immediately, I spun around and took a good look at her, recognizing her as the girl that had been a bully to my daughter for two years.  I hurried the girls into the cafeteria and to a table, my mind racing to determine my next action.  My first thoughts centered around making a quick escape and taking them home.  Not wanting to do so, I decided that I would keep my daughter so busy that she would not know that this girl was also at camp.  I felt very tired all of a sudden, realizing that this proposition was going to require a lot of work and quick thinking.  I decided to enlist the assistance of my 8 year old to help me.  She is very protective of her sister and I knew I could count on her. 

We went through this for the first evening’s activities as well as the activities for the next morning, and through lunch of the second day.  Any time for Mom to relax in the mountains was rapidly disappearing into the time and energy that was spent staying one step ahead of my daughter.  This was not fun for me nor my younger daughter, and my older daughter was happily oblivious.  This was not going to work for the remainder of the weekend.  I talked to “Chipmunk,” explained the situation, and the other girl’s Troop Leader was given a head’s up as well. 

That evening at dinner, I made my move, informing my daughter that the girl was at camp and that I had a plan to help her feel better.  She immediately began to exhibit anxiety and worry.  I gave her a hug, told her that she was going to be ok and that we were going to handle this together.  I had hatched a plan that would hopefully put this to rest and bring resolution to my daughter so that this experience would be memorable and meaningful to her and give her added self confidence. 

The ritual at camp for meals was to have small pieces of plastic fruit that were distributed from table to table allowing the girls at that table to visit the salad bar.  When our table had completed our round at the salad bar, I handed the plastic banana to my daughter and we walked to the table across the room, her with much trepidation as she was rapidly breathing, knowing we were going to the table at which sat the girl who had, in a nutshell, made her life very difficult.  I held her hand and encouraged her the entire way.  When we got to the table, she reached out, her hand shaking, and held the banana for the girl to take.  She uttered a tentative, “Here,” and the girl reached out, smiled and thanked her.  The exchange was complete; the ice had been broken.  My daughter sighed, and practically flew back to our table. 

The interaction was a success, yet I had one more plan in place to help my daughter conquer her fear of this girl and try and make this a positive experience for her, as well as a potential learning experience for the other girl.  The following day (final one at camp), had closing exercises and a “SWAPS” exchange planned.  (SWAPS are a long-standing tradition of exchanging simple do-dads with new friends and are so called because of the acronym: Special  Whatchamacallits  Affectionately Pinned  Somewhere.  http://www.girlscouts.org/who_we_are/facts/swaps/)    

During a SWAPS exchange, the girls bring pins, etc. that they have made and exchange them with their new friends.  I had made one the night before to give to the girl and planned on visiting with her at the exchange and telling her of her strengths and challenging her to always use her dynamic personality to the betterment of others, rather than to try and control them.  This exchange went well, and my daughters saw the interaction (but did not hear it).  When it came time to do the SWAPS exchange, I sent my daughter to exchange with the girl (she was able to approach her on her own without my support) and stood by, watching her countenance change.  Within a few seconds, she turned, with a huge smile on her face, and walked a little bit taller that day.

I am so proud of how she did in facing the fears which had troubled her for so long.  I’d expected to bring home memories from Girl Scout Camp, but had no idea that the memories which she would be bringing home would involve such a life-changing experience, especially since she has not mentioned this girl and her bullying since. 

Have you had a Boy or Girl Scout experience with someone with special needs?

~~~~~~~~~~~~~~~~~

Dena Wootton Millet is a wife, mom of 2 girls and step-mom of 4 girls - the six range in age from 8 to 20.  Dena and her husband spend a vast amount to time trying to keep track of all the ins and outs of 6 girls and their busy schedules, not to mention their own!  One of Dena's daughters was diagnosed with Asperger's Syndrome at the age of 7.  Dena works raising awareness of Asperger's Syndrome as well as her work to increase awareness of and advocating for adult and child victims of Domestic Violence and Abuse.  She co-authored Cheaper, Greener, Cleaner - Ceiling to Floor Savings and regularly blogs at: http://www.cheapergreenercleaner.com/blog-every-day-the-cheaper-greener-cleaner-way/

Autism Celebration 2012: An Interview with Jenn Jamalkowski

Jenn and her family

Today, I have the privilege of sharing a slice of Jenn Jamalkowski's life with you. Jenn has worked with children with autism and adults with a variety of severe cognitive disabilities for 22 years. She loves her job and has great respect and love for those she cares for.

QOTC: You've worked with individuals with disabilities for a long time. Please share with us why, and what type of work you do.

Jenn: I began working with individuals with disabilities over 22 years ago, when I was 18 years old. I initially started in an care facility for children with disabilities and I fell in love with work. I quit going to school and never looked back.

I cannot say that I recommend that path for everyone. However, for myself I knew it was my calling,it was were I was supposed to be and what I was supposed to be doing. I currently work at a state facility for adults with physical and mental disabilities. This facility is for individuals that require more intensive supports then many individuals that live out in community settings. We provide 24 hr medical services,behavioral and therapy support, staff support as well as recreational, employment and many other individualized supports.

QOTC: Please tell us about a moment when someone with Autism blessed your life.

Jenn: I could not ever pinpoint just one moment that I have been blessed by someone with Autism. I have received countless blessings over the years. It has allowed me to have more patience and understanding, then I ever would have had if it were not for the work I have done in the last two decades. I would never give back a second and I know I am a better person because of my associations with individuals with Autism and their families.

QOTC: As someone who works with adults with more severe disabilities, what advice do you have for people in the community? What can we do to brighten up their day when we see them out and about?

Jenn: My biggest piece of advice is to never make assumptions. Just because cannot verbally communicate with you does not mean they do not understand what you are saying. Take the time to try and communicate with them, figure out how they communicate and spend time listening. Communication isn't just about words.

Say hello, show you care, don't avoid them. Remember that just because they have autism doesn't mean that they do not have feelings. treat them with the same kindness and respect that you would want to be treated with.

QOTC: What's one message you want to share with everyone for the Autism Celebration?

Jenn: Support for the Autism community has come so far in the past 20 years. It has been exciting to see all that has come about in this time. I cannot wait to see what changes the next 20 years will bring. With support from educators, the community and families I amazing things are yet to come.

QOTC: Thank you so much for sharing your experiences and knowledge with us today, Jenn!

How have you shown support or developed a friendship someone with severe Autism?

Autism Celebration 2012: Sixth Grade Science Camp by Tanya Parker Mills

My son, Jason, was diagnosed with Asperger’s syndrome way back in first grade. So, by the sixth grade, we were well ingrained in all his routines—grilled cheese sandwiches and water for every meal (at school, he ate Ritz Bits with Cheese), no doors or windows left open in the house anywhere, the noise of a humidifier in his room at night to help him sleep, etc.

Perhaps the open doors and windows seem puzzling. Jason, you see, experiences inordinate discomfort or fear around two things—rain and flying insects.

As for the rain, he dislikes getting wet. During his elementary school years, if so much as a drop of water landed on his shirt, pants, or socks, he’d change the spoiled clothing immediately.  Needless to say, an umbrella was every bit as important as his backpack for at least half of the school year. Imagine our challenge at getting him to enter the waters of baptism when he turned eight. (We succeeded, by the way, but only barely.)

Flying insects of any size—from the miniscule gnat to the dragonfly—have always set off his panic mode. (Birds, he can handle.) I’m not sure if their buzzing, generally inaudible to our ears, drives him nuts or if it’s the unexpected zooming around they do in mid-air.

In any case, because of these flying creatures and the inevitable possibility of being drenched by unexpected rainstorms, we had pretty much become an indoor family by the time he entered sixth grade.

Then came Science Camp.

All the sixth graders looked forward to these three days spent up in the San Jacinto Mountains of Southern California. All, except Jason. Was he interested in hiking outdoors, examining pond scum, learning about insects, riding horses, learning to use a compass, paddling a canoe, and sleeping in a dorm room full of noisy classmates? Of course not.

Despite my husband’s best efforts to coddle our son and let him have his way, I joined forces with Jason’s teacher, Mrs. Parks, to cajole and plead and even bribe Jason to give this outdoor adventure a chance. (I believe the bribe involved several videos he had long been wanting.) I promised to go along and cook his grilled cheese sandwiches the very same way I did at home. Mrs. Parks promised that, rather than writing a big long report about his experience, Jason could make a video. Finally, I agreed to take his humidifier along, as well, and if he absolutely couldn’t stand it, we would leave after at least 24 hours.

Grumbling and cranky, Jason got in the car on the appointed day and together we set off for Pathfinder Ranch. Nearing our destination, I stopped at a good lookout spot to take some footage of the valley far below for the video, inviting Jason to step out of the car and see for himself. Nothing doing. He was anxious to get to the camp and see if our accommodations would be suitable. They were. And we beat the school buses there by half an hour, so we were able to film their arrival.

Fortunately, the camp director was most agreeable and I had free access to the cafeteria kitchen to set up my griddle. I also got my own bedroom in the nurse’s cabin, so that I wouldn’t have Jason at my door in the middle of the night. That was a good thing, because it forced him to deal with his situation the best he could.

We had our challenges over the next three days (yes, we stayed the full time). First, one of the introductory games linked the kids together in teams and then had them chasing each other. Jason, on the tail end of one of those links, freaked out because he had no clue why everyone was grabbing for him. On the second day, he panicked on his afternoon hike up into the mountains when we came to an especially “buggy” spot and I had to chase him back down the trail for a good half mile before I caught up with him. He nearly gagged on the third day when he tried to collect the smelly pond scum.

Overall, though, there were a dozen major and minor triumphs. While he didn’t sleep well, he slept enough. He attempted most of the games and activities. He made some new friends. He took an active part in the lessons. When one camp instructor asked what the three parts of an insect were, Jason spied the huge model of an ant behind her and guessed, “The head, the body, and . . . the butt?” She admitted he was close then went on to teach about the thorax and the abdomen. While he refused to go near the horses (due, no doubt, to the horse flies), he tried archery and even got in a canoe. On the night of the Talent Show, despite my qualms that he might embarrass himself, he drew generous applause with his spot-on imitations of Harry Potter, Ron Weasley, and Hermione Granger in the scene where the three meet up for the first time on the train.

The greatest victory came on the morning of the second day at the end of his first hike up one of the trails. Two female instructors were waiting by a rocky wall to teach the campers how to rock climb with harnesses. I never would have thought he’d try it, but he did, getting halfway up before rappelling down again. And he loved it! Afterward, when we got back home and he was unpacking, he admitted that Science Camp was a lot more fun than he’d thought it would be.

Now, seven years later, my son is getting ready to graduate from high school. He still doesn’t care for the outdoors, but he knows he can handle it. I have a video to prove it. 

What has helped your child with Autism deal with sensory issues or things that stress them out?

Autism Celebration 2012: Helping Autistic Kids Become Stellar Future Adults by Connie Sokol

Connie and her son.

 I remember sitting in church with my son who was about 18 months old. An older woman came up, played with him for a few minutes, then turned to me and said something like, "He’s a good little boy, now. Wait until he hits two." Shocked, I simply smiled and thought once again, old women can be annoying.

And then he hit two. As his behavior became more difficult, we sought more doctors’ advice. Most played the ADHD key, some depression, some anxiety. We spent our days dealing with difficult mental, emotional, and physical issues, and trying various meds but nothing took. As a mother, I felt something was missing in the diagnosis and kept looking for the click. Finally, we found a specialist and the right diagnosis of Asperger's Syndrome.

He was seven.

Now he is 18. He just finished his first semester of college at BYU-Idaho—doing his own laundry, meals (even nutritious ones), schedule, and in general making his own life happen. He is now preparing to serve a full-time LDS service mission in June. I can't explain the joy I feel watching him serve his brothers and sisters, play with them in a dug out snow slide, or offer to go do grocery shopping (and do a better job than I).

How did we get from terrible twos to ecstatic 18? I'm no expert and have zero advice. But here are a few things that worked for us.

1. A solid relationship with mom. In speaking with different doctors they have told me this is number one for Aspies (their term). A connected, healthy, positive relationship is key for these kids to create connection, understand social savvy, and trust the often foreign information they're learning. Plenty of positive is huge—writing a list of the great things about your child is helpful. Or “praise first”—before sharing a to-do or correction, praise first what a specific thing they’ve done well that day.

2. Explain their diagnosis and skills they need to learn. Over the years when Ben starts "cycling"—our word for his predictable behaviors in certain situations—we point out what’s happening. When he gets overstimulated, we remind him to take a personal time out. When he gets too "factoid" for 10 or more minutes (our phrase for endless fact-telling) I'll simply say, "That's two facts you've shared, now I need a connecting question." He'll stop and say, "Oh yeah, how's your day?"  Using real-time situations and a few years of homeschooling, I have spent time identifying social cues, hygiene, habits, and how other people perceive him in conversations. Ultimately, these brief but timely teaching moments have helped him develop greater self-confidence and social smarts.

3. Use structure. This is key. As a young child, it was vital to transition him at least 5 to 15 minutes before moving to a new activity, leaving to do errands, or getting ready for bed, etc. Having regular times of the day for bath, reading, meals, play time, were all crucial in helping him not only establish routines but for them to become so natural he could focus on newer learning.   

4. Wisely use a combination of eastern and western medicine. For a long while our son couldn't regulate his sleep. We tried various suggestions from doctors—sleep hygiene, regular rituals, Benadryl, and more. My husband felt it had to do with high cortisol levels (leaving him tired but wired at night) and found a Chinese adrenal herb that has been a lifesaver. Now he can sleep regularly and generally fully. Acupuncture has also helped. We’ve combined eastern methods with western medicines—finally finding two drugs that help to bridge his neural and emotional gaps. But we’ve kept him on the lowest possible dose and always after working on the behavioral practices first (and combining them with medicines after). 

5. Teach him to think like a future adult. We encourage him to see himself as a functioning adult. When he first started working with my husband Dave on a construction site, Dave would find Ben sleeping under a truck. Now he actually helps him install hardwood floors. It’s bit by bit, increasing skills and awareness, giving the big picture all the time of where they’re going.

6. Help him/her find something to “grab onto”. Michael Landon wasn’t always successful director and Pa Ingalls. He came from an abusive home and in high school had facial tics and made involuntary gulping sounds. But one day in PE he threw a javelin 30 feet farther than anyone else and he says, “I found something I could grab onto. And I grabbed.” He built his success on that one discovery. Our son loved Legos, then fiddling with videos, which morphed into stop-motion video movie making. We found a local contest, which he entered and won “Most Creative” and $500. That gave bolstered his confidence to try other events and talents.

7. He’s part of a family. We understand his Asperger ways. And yet, we need him to stretch socially. So we have him play games, go bowling with us, make and eat dinner together, and in general spend a good amount of time with seven other people in his family. We remind him he’s as special as everyone else and he’s not the only one who needs attention. This helps him understand he can’t consume our attention constantly. He’s learned to walk into a room and instead of starting to speak about his interests, he now first asks, “Is this a good time?”

  

It all works. Recently my husband and I celebrated our 20^th anniversary in New York City. Ben supervised the children, including playtime, meals, laundry, errands, and cleaning the house. That’s what I call a mama paycheck. Though it’s taken many years and untold energy, the fruits of our labors are now sweet.

How do you help your child prepare for the future?

 Connie Sokol is the mother of six—expecting her seventh—and just released Motherhood Matters: Joyful Reminders of the Divinity, Reality, and Rewards of Motherhood. She is also a presenter, former TV and radio host, and author of several other books. For tips, columns, and products visit www.8basics.com.

Autism Celebration 2012: Advocating for Our Children with ASD by Janell Locke

            When my son was going into kindergarten, it was a traumatic time - more for me than for him.  He was leaving the safety of the developmental preschool, where I knew and trusted everyone, and entering the “real world” – a regular ed kindergarten class at the local neighborhood school.  I dutifully prepared a bullet-point list of “essential” information I felt the staff at the new school needed to know about how to deal with my son.  Then, since I have a tendency to be long-winded, I weeded it down to the final product - 3 pages with 20 bullet points.  I made copies for his regular ed teacher, special ed teacher, and the paraeducator who would be working with him.  

            A year later, at the beginning of the next school year, two things happened.  First, I gave the same list to my son’s 1^st grade teacher and his new special ed teacher.  Second, as a brand new special ed teacher, I received an 8-page single-spaced narrative about one of my students.  This was eye-opening for me.  Because I was now on the teacher side, my son’s teachers were much more blunt with me than his kindergarten teachers were – “Janell, do you really expect me to read this?  I don’t have time to read this.  Nutshell it for me.”  Suddenly, my carefully thought-out list became four short phrases – 

1.  Stay calm, no matter what. 
2. No food because of life-threatening allergies. 
3. He’s a runner and will leave the building. 
4. Use “first-then” for everything.

            But, even more eye-opening to me, was my reaction to the document I received.  As the parent of a child with a disability, I understood COMPLETELY this parent’s desire to share about their child and should have been jumping at the chance to read this in-depth picture of my new student.  But I was completely overwhelmed.  Honestly, I didn’t even look at it – it went straight to my “I’ll get to this when I can” pile on my desk, where it stayed until the end of the school year.  Oh, I have plenty of excuses, all of which were very valid.  After all, I was just hired 2 weeks before school started and expected to create a brand-new classroom from scratch including buying curriculum AND start courses toward my license AND attend the new teacher trainings --- all at the same time.  But those things don’t matter to the parents of that individual student. I failed them – 2 weeks into my job and I had already failed at something that was one of my prime directives – give parents a voice.  My only saving grace was these parents came to Back-to-School night and gave me the opportunity to hear from them in person about their child.

            This experience taught me three things.  First, it is better to ask for a short, face-to-face meeting with your child’s teacher at the beginning of the school year.  Stress that you only need 15 or 20 minutes of the teacher’s time and stick to that time limit.  Emails and notes are great for a written record but a face-to-face meeting is better for gaining the complete attention of the teacher.  Second, while it is tempting to share every possible contingency of what could happen with your child, limit yourself to the 3 or 4 things that your child’s teacher needs to know to survive the first week.  There will be plenty of opportunity for the other strategies later, as they are needed.  Third, give the teacher the benefit of the doubt.  Don’t immediately assume the teacher isn’t going to work with you.  Even the teachers with the best of intentions are overwhelmed and are very limited in their time and resources.  So, until the teacher gives you reason to think otherwise, assume she’s slow to respond because she’s swamped – and trust me, she IS swamped.  Give her a reasonable length of time and follow up with another attempt to address your concerns.

Prior to becoming a special ed teacher, I was the president of a parent support group – in fact, I still am.  In this position, I field a lot of questions about how to get services from the school district.  In all honesty, special ed law is VERY complicated.  The more informed a parent is, the more likely that their child will get the services they qualify for.  Even more honesty – NO teacher OR district person knows everything there is to know about special ed law.  I had a 30 year teacher/district person tell me recently, “Don’t take my word for it.  I might be wrong.  I don’t know everything.  That’s why we call [so and so] at the State Office.”  So, become informed and come to meetings with your findings in black and white.  If you do your homework, you’ll have more success.

            How can you become more educated?  The whole basis of the law is a federal law called IDEA 2004 – the official website is  http://idea.ed.gov/ -- click on the section that covers your child’s age.  I highly encourage every parent to read IDEA and highlight the parts you want to know more about.  Then go to http://www.wrightslaw.com/ and use their search feature to get interpretations of the sections of IDEA that you wanted clarification about.  Then, go to your state’s Office of Education website and explore the resources they have under special ed.  One of the resources on the Utah State Office of Education website is the handouts from the 2010 Special Ed Law Conference, which I attended – here’s the link -- http://www.schools.utah.gov/sars/2010-Conference.aspx .  Talk about eye-opening.  That conference was EYE-OPENING!  I highly encourage every parent of a child with autism to read the one about autism and LRE (Least Restrictive Environment).  In fact, if you ever get the opportunity to attend a law conference, jump at it.  Utah has one every August and it’s attended by educators, college students, AND parents.

            Finally, as the president of a parent support group, I have to put a plug in for being involved in one.  This will help you meet parents who have “been there done that” as well as give you opportunities to attend classes that will help you become more knowledgeable.  Check the websites of the various national organizations to see if they have a local chapter in your area.  Contact service providers and the school to see if they know of any support groups in the area.  If you have to, start your own by putting out flyers and asking other parents to help you get one off the ground.  

            In an effort to take my own advice, I’m going to close by nut-shelling my long-winded advice:

1. Have a brief face-to-face to share essential information.
2. Assume the best of intentions.
3. Become educated.     
4. Become involved with other parents.

How do you advocate for you child?

Janell Locke is involved with the autism community in a variety of ways. She has an awesome 9 year old son with autism, teaches a special education elementary class, and is the president of the National Autism Association of Western Utah. She loves helping parents and advocating for people with autism.