Monday, April 30, 2012

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.



Friday, April 27, 2012

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!

Wednesday, April 25, 2012

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. 

Monday, April 23, 2012

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!

 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/ 

Friday, April 20, 2012

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/

Wednesday, April 18, 2012

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?

Monday, April 16, 2012

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?

Friday, April 13, 2012

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 20th 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.


Wednesday, April 11, 2012

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 1st 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. 

Monday, April 9, 2012

Autism Celebration 2012: Our Kids Can Do ANYTHING! by Kim Furnell

As a mom with a child on the autism spectrum, I’ve gotten used to hearing about the things that are challenging for my son.  He has many challenges.  Social situations, writing, and reading are just a few.  However as mothers, we have to realize that it’s our job to turn the challenges our children face into teachable moments that build their self-esteem and show them that even an elephant can be eaten, if you do it one bite at a time. 

When Ben, my son, was in 5th grade, I decided he needed to learn a musical instrument.  As a former band geek myself, I thought he should be in band, plus I knew it was a very social activity.  I talked it up.  I got excited and got him excited.  After working with the band director, my son chose the clarinet. 


He played, practiced, and took private lessons.  Learning to put the thing together took him a good couple of weeks. 

Every parent should experience the sheer delight of hearing a 10 year old learning to play an instrument.  The proverbial nails on a chalkboard feeling?  Not even close.  Remember all the big debates about water boarding the terrorist prisoners in the news?  I thought we should just lock them in a room with tapes of a beginner practicing around the clock and they’d be begging for mercy. 

I remember when I mentioned to his band director my desire for Ben to participate in the high school marching band.  For just an unprofessional millisecond, his look said it all.

“Are you high/stoned/insane?” 

See, our local high school takes marching band to a pretty high level.  They are one of the best bands in the state.  They go to regional competitions and regularly place in the top 3 bands.  Winning happens on a regular basis.  The kids involved spend over 250 hours from the end of July through the end of October practicing, and that’s not counting the individual work they do to have all the music memorized before they show up in July to summer band.  It also doesn’t count the Saturdays in October that are spent at the competitions.  I wanted Ben to have that social outlet, that instant network of friends from marching band. 

So, he prepared for 9th grade and high school.  I had already spoken with the band directors and prepped them.  He worked on memorizing his music over the summer.  The last Monday in July loomed like a roller coaster he was finally tall enough to ride.  I warned him, while keeping my comments mostly positive, of the challenges he would face.  Heat, sweat, pain, people yelling, mass chaos, etc.  After all, those of us who have been through summer band (or “band camp”) know it can put Scout Camp to shame.  It’s more like Boot Camp for musicians, complete with its own vocabulary, attitude, and drill sergeants (they’re called “Drum Majors”).  He had his water bottle, sunblock, ball cap and comfortable shoes.  I reminded him to drink, drink, drink, because this is Kansas, it’s July, and dehydration happens.  I was proud that he didn’t throw up even once. 

After 3 weeks of torture rehearsals, his band director asked to speak to Ben and I.  She complimented Ben on his attitude, work ethic, and playing ability.  However, he was struggling with marching.  After all, marching and playing an instrument is HARD. 

Since our band actually learns two shows, she proposed Ben march in the easier, more fun, halftime show that is performed for the students and spectators at football games, then play from the front sideline during the more serious competition show.  She expressed concern for his safety (apparently he had more than his fair share of “near misses” with flying flags and/or rifles), and the safety of the other students (he was also being trampled by kids who would run into him because they knew where they were going and he didn’t).  Marching in the “Rock Show” would help him learn the fundamentals of marching, while keeping him (and everyone else) safe. 

OK, sounds good, because I am a huge fan of emergency room avoidance. 

However, by the end of that first marching season, Ben realized he wanted more.  He wanted to march in the competition show.  He wanted to be on the FIELD when the announcer said “Blue Valley High School, you may take the field in competition.”  So, he worked.  He practiced with the incoming 8th graders in their marching clinics, something the other students didn’t have to do.  I marked off 5 yard lines in the back yard so he could work on his steps.  He went to all his sectional rehearsals and worked, worked, worked.  July loomed again, this time anticipated with a little more fear, because he WANTED to march this year.  He was nervous, because he knew what he wanted, but was afraid he couldn’t do it. 

3 more weeks of torture/rehearsal.  He drank his water, applied sunblock, sucked down Popsicles that the band moms brought, and marched, and marched, and marched. 

He ate, slept, marched and played.  I prayed and wondered what I would say if/when he didn’t make the competition show.  I honestly thought he had a snowball’s chance in hell of making it.  The last day of band camp arrived, and when I picked him up, he had a HUGE smile on his face.  “Mom, I’m in the competition show.” 

Later that evening, after the performance the kids put on for their parents to show us what they’ve accomplished in those 3 weeks of rehearsals, I found the band director and thanked her for putting Ben in the competition show.  She looked at me and said “He earned it.  I didn’t give it to him.  He earned it like every other kid out there.  He’s great.” 

Parents, let’s not be afraid to give our children these experiences. 

Yes, it’s hard to watch your child work twice as hard as everyone else to achieve the same results.  But to see the look on your kid’s face when he knows he’s accomplished something is worth all the heartache and tears.  Then when that first football game and competition comes—and even though there’s no crying in football—you can just let the tears flow and not apologize once for them.  You’ve earned them.    


What has your child or friend with autism done to step out of their comfort zone and learn something new? How has the experience helped him or her?

Friday, April 6, 2012

Autism Celebration 2012: Getting Used to Paul by Shirley Bahlmann

I’ve been comfortable around people with disabilities since I was eight years old. That’s when my parents brought home my baby sister, a cute little blue-eyed blond with Down syndrome. My ability to see her as a person was brought into sharp focus at a family reunion when I was twelve. We were swimming in a lake with our cousins when a sudden cloud of attacking horseflies forced us to duck under the water to escape their stinging bites. Since my four-year-old sister was too little to put her head underwater, I yelled, “Splash water on her, keep them off of her!”

One of my cousins gave me a curious look and said, “Why? She can’t feel them.”

I knew well and good that she could feel the pain of a horsefly bite and wondered at my cousin’s lack of intelligence. As I thought it through over the next couple of days, I finally realized that the attitude simply stemmed from a lack of experience with people like my sister.

Shirley, Paul, and her son.
Over the years, I’ve worked off and on with people of various ages who live with mental challenges. When we began providing respite care for a boy with Down syndrome, who my boys had been spending time with anyway just because they liked him, a new family moved into our neighborhood. The mother discovered that we did respite care and asked if we would be willing to provide care for their nine-year-old son, Paul, who had severe autism.

To tell the truth, I was hesitant, not just because I’d never worked with a person with autism before. It was because he was non-verbal. Everyone else I’d helped, whether old or young, could speak at least well enough to be understood and to understand me. How could I communicate with a boy who didn’t speak? Besides that, he couldn’t see very well. He had enough vision to step up at curbs, but he didn’t seem to recognize his food unless he smelled it first. Sometimes he would shake his head and his eyes vibrated back and forth.

When I voiced my concerns to his mother, she said, “Just give it a try. You’ll get used to him.”

So we brought Paul to our house, where I discovered that he was very kinesthetic. He liked manipulating objects such as poker chips in a bowl, water in a bottle, sand flowing from one side of a toy to the other, and book pages flipping from one cover to another. He also loved swinging on our backyard swing and playing in the water. Any water.

One day, following his mother’s suggestion, I put him in the bathtub. That’s when I discovered that he also liked to manipulate shampoo bottle lids. He very much enjoyed his mega-bubble bath, courtesy of my Aussie 3 Minute Miracle hair treatment.

The swimming pool was a natural environment for Paul. He pushed off the side and tiptoed across the pool in water so deep he had to tip his head back, his face up, hair fanning out like a dark mane while his blue eyes scanned the ceiling in jerky movements.

And his sudden laughter delighted me.

An interesting anomaly about Paul is that while children with autism are generally known for being resistant to touching, Paul likes hugs. If he is picked up and swung around, he laughs. If he is tossed into the water, he laughs. Unless the water is cold.

One day we went to the pool and found the water cooler than normal. Paul put his foot down on the top step and hesitated. It was only his love for water that let him allow me to lead him down into the pool. He bounced on tippy toes, tried to tip his head back, but suddenly jerked it forward and shook his head. He tiptoed to the side, shook his arms, let out a yell, and tried to tip his head back again. Still too cold. After about fifteen minutes of trying to find a comfortable spot, Paul reached out, grabbed me around the neck so tightly his chin was on my shoulder, and chirped, “Cold.”

I turned startled eyes to my son. “Did he just talk?”

“Yeah. He said ‘cold.’”

“That’s what I thought.”

I marveled at his vocalization, glad to know I hadn’t imagined it. Since he was obviously uncomfortable, I walked up the pool steps with him still clinging to my neck. I tucked a towel around him and carried him into the dressing room, a slightly awkward bundle with his long, thin legs wrapped around me, but a precious one just the same. “We’ll get your clothes on,” I assured him. “You’ll be warm soon, then I’ll take you home and we’ll tell your mother that you said a word! She’ll be so happy.” As I walked through the dressing room, carrying on a conversation with a non-verbal boy, it hit me.

We were used to Paul.

Please tell us about a sweet, fun moment you've shared with someone with autism.

You can learn more about Shirley and follow her adventures on her blog.

Wednesday, April 4, 2012

Autism Celebration 2012: Kevin's Birthday by Danielle Cloward

As we prepare for my son Kevin’s 8th birthday, we’ve been talking and trying to think of what to do for him and/or get him.  We decided to have a small birthday party - his first ever - consisting of Kevin and up to three of his Sunday School classmates.  We’re going to play with some of his favorite toys like Beyblades and bean bags and we’ll include some more traditional activities like pin-the-tail-on-the-donkey.  Kevin had only one request:  cake!  To fulfill this wish, we’re going to have cupcakes for the boys to decorate and eat.  This may all seem normal for an 8 year old boy, but, believe me, if it goes well, it will be a miracle.

Why?  Because Kevin is autistic and non-verbal, so the fact that he communicated “cake” to us is terrific; it means that what little speech he has is improving.  The fact that we feel he’s ready to have a birthday party, even if only with a few friends, is a step we never expected to be able to take;  Kevin’s doing something normal boys his age take for granted, and, so did we, until a few years ago.  I can’t wait to see the kids frosting their cupcakes!  It will be occupational therapy in secret, but tasty fun for all.

We’ve been considering gifts for Kevin; too, like clothes, Star Wars figures, and other toys, but none compare to the gift God gave us 8 years ago this April.  Kevin has opened our eyes to our need to become better parents and how to appreciate the small, everyday blessings of life we used to overlook like putting shoes on the correct feet, or being able to play a video game well enough to get through a level, or even the simple joy of snow falling.

Yes, Kevin’s 8th birthday means a lot of milestones for him, and us.  In the past few years, we’ve watched as Kevin struggles with speech, coordination, and social acceptance and have received much in return.  As we celebrate Autism Awareness Month, let us focus on what we have gained from our autistic loved ones who have enriched our lives far more than we could ever impact theirs.  I’m lucky enough to have 2 sons with autism, who help me become a better person every day. Thanks Kevin and David!

What birthday milestones have you experienced with your loved one with autism?

Monday, April 2, 2012

Autism Celebration 2012: The Best Advice I Ever Received by Danyelle Ferguson


About six months after my son was diagnosed with Autism, a woman visited with me at church. Her daughter was around nine years old and had Down syndrome. She asked me how we were doing and actually wanted a sincere answer in return. We had a wonderful discussion. It was one of those rare moments when I felt like someone actually understood how I felt and what was happening with our family.  She shared some advice with me that became the best advice I ever received.

"Danyelle, you need to dream for your son. You need to look at where he is, create dreams and goals for him that are outside his reach - then triple them. You need to dream big because he doesn't know how. You don't know what his potential is. Don't get stuck in whatever stage he's in now. Keep looking forward to the possibilities."


I don't know why this was so profound for me. At the time, I was just hoping someday my son would say Mom and maybe have a friend to play with. But each time we met for IEP's, behavioral interventions, or my hubby and I talked about our son's future, the words "Triple it. Dream big." were always there, reminding me to keep looking ahead. Even now, ten years later, those words pop up often.

I can't tell you how grateful I am that that mother took the time to share a little bit of wisdom with me. There are so many experiences my son would never have had because my first inclination was to love him, hold him close, and protect him from the harsh world he was oblivious of. But that advice encouraged me to loosen my hold a little bit at a time, to enroll him in clubs, sports, or activities that required him to stretch, learn, and grow. Those nudges helped push him a  little more into society, made him pay attention to the people around him, actually hold conversations, and develop social skills. Those experiences have helped him grow into the young man he is today.

This year for my annual Autism Celebration, I invited a variety of parents, professionals, and caregivers from all around the United States to share their favorite moments and best advice. Each Monday, Wednesday, and Friday throughout the entire month of April, you have the opportunity to experience a bit of the wonders of Autism from someone new. I'm so excited for this opportunity to grow and learn together from others on different paths of the Autism journey. Happy Autism Awareness Month!

How have you helped a child with Autism to Dream Big?
Review Disclaimer: Sometimes a book I review has been sent to me for free by a publisher or an author. This in no way effects my review, which is my own opinion about whether the book was a good read for me, fit my tastes, and if I would recommend it to others. Other than possibly a free book, I am not compensated in any way for posting a review.