Monday, July 26, 2010

Dreams of a million dollars

I have no clue what made me think of this idea, but I thought I would share what I would do if I won a million dollars and could use it on anything, tax free.
I’d give $10,000 to my church; I feel like they are family and show God’s love to others well. I find comfort and joy in attending and purpose; I really think they would put the money to good use.
I’d give $20,000 towards each of my siblings (4) college education. They all deserve a chance to pursue what they want, and this would help. It would be an investment in their futures, college educations would help them get careers.
$10,000 would go to the Autism Society of Tidewater. They help me and many others in the community. Also, they treat everybody with respect, whether you’re on the spectrum, a parent, a professional, or anybody else. I think they could use the money and I’d really like to see them be around for a long time.
I’d set another $100,000 aside for furthering my own education the rest of my life and training.
The rest I’d use to open my own autism center. I’d provide daycare/activities for all ages and levels of functioning at a sliding scale rate. I’d also like to employ as many people on the spectrum as possible, from everything from computer services to building to cleaning. I’d pay people to give lectures in some meeting rooms open to the public in areas of their interest. (not necessarily on an ongoing basis, but I think it would provide pride and show people in the community how people on the spectrum can be talented) I would also hire a staff for people to receive help from, ranging from therapists to OT to educational consultants at prices affordable to community members. I would also try to make a library area where people could go to relax and make it sensory friendly. I’d also hire people to work at a café there that served a delicious menu with GFCF options, so people could have jobs and families could have somewhere to eat when they have appointments. I’m not entirely sure *how* to do all this, but I think it would be nice.

(yes, yes, one can dream)

Thursday, July 22, 2010

Good laughs found here...

On The Spectrum webcomic

This webcomic makes me giggle; I can see myself as a kid in a few of the strips. It's by a dad of two autistic boys and he puts his life with his boys into the comic. I'm not posting a preview strip because I don't know if he would mind, but go check it out.

Wednesday, July 21, 2010

Things I don't say about autism but want to

1. Please stop asking if I'm like Rain Man. No, I'm not. And I do not count cards.
2. I suck at math; savants are rare and I'm not one of them.
3. Staring at person who is obviously stressed out and are covering their ears is rude. (I thought *I* was the one who had bad social skills...)
4. On another note, quit staring at a parent with a kid in meltdown mode; if you want to say something; say "Can I help?".
5. Don't assume I can't hear you when I'm with somebody else. I can, and I'm an adult. Please address me, even if I seem "odd". Sometimes I just need a little help.
6. I'm not stupid; it takes me longer to learn some things.
7. When I hurt your feelings, tell me! I don't know I did.
8. Please, please don't pat me on the back; especially on my left side. It scares me, I can't see you and dislike it.
9. When I ask you to repeat yourself, I am trying to make sure I heard you correctly.
10. I try to say things that interest you, but can't tell if it's boring you. Say something, or I won't stop.

Monday, July 12, 2010

Kicking the Spectrum

I heard about Kicking the Spectrum on Twitter and was interested right away: autism and karate? I was thinking it would be awesome if there was an autistic Karate Kid. Then I got lost in daydreaming about how the original movie would have differed. Anyways, after snapping back into focus, I asked the people at Kicking the Spectrum if they wouldn't mind an e-mail interview. They didn't mind at all, hooray! So we get to learn more about this program and the people behind it:

Background information-personal connection to the special needs community

Stephanie Silverman

Working with children with special needs has always been something I have been pulled towards. When I was in the 6th grade, I was asked to be a “helper” in the classroom for children with special needs one day a week. I loved it! The following year, my younger cousin was diagnosed with autism. I was intrigued. I started doing research and learned everything I could about autism. I would visit my family and sit in on my cousin’s ABA (Applied Behavior Analysis) sessions and soak it all in. I knew that this was what I wanted to do with my life. I continued to volunteer with children with special needs in both my town’s summer school program and the local Challenger League, a softball league for children with disabilities. By the time I entered college at the University of Maryland, I knew without a doubt, that early childhood special education was going to be my major and when I graduated I would work with children with autism utilizing ABA. I had seen this methodology help my once non-verbal cousin become a high functioning individual in a typical classroom. Once, I graduated from Maryland, I found my way to an ABA classroom at a special needs preschool in Brooklyn. I worked there for two years and started my Master’s degree at NYU. During my time at NYU, I worked as an ABA therapist doing 1:1 therapy with children in their homes around NYC. Finally, I landed at the McCarton Center for children with disabilities, where I work as an ABA therapist.

Working with children with autism and other disabilities is not only a job for me, it’s a passion. I love the look in a child’s eyes when the “light bulb” goes off. Or when a parent witnesses their child have a breakthrough. It’s not often that a person loves what they do when they go to work everyday, I consider myself very lucky!

David Rosenberg

I started studying martial arts at 7 years old. It was recommended to my parents after I was diagnosed with Attention Deficit Disorder (ADD). Though I was unaware of the diagnosis, I took to martial arts. It helped teach me the focus that I needed in my everyday life. As time progressed my love for the sport increased and my desire to give back increased. At 15 years old I began to teach, mainly the younger students. My instructor, World Champion Tokey Hill, began taking me to do demonstrations with him; this was when I first was exposed to children with special needs. I was able to work at St. Mary’s Hospital for Children. St. Mary’s Healthcare System is one of only a handful of organizations around the country that is dedicated to providing intensive rehabilitation, specialized care, and education to children with special needs and life-limiting conditions. Subsequent to my encounters with St. Mary’s, I also worked with a child with Cerebral Palsy at a sleep away camp for 8 weeks.

I continued teaching throughout my remaining days in high school and through out college. I also have taught on and off through out the past few years and martial arts has never been far from my heart, however it hasn’t been until now that that spark has been reignited.


It is a martial arts inspired program developed to teach and motivate students with special needs to combine fitness and wellness for life. This innovative program incorporates the fundamentals of Japanese Shotokan Karate. This unique program combines a martial arts instructor with an ABA (Applied Behavior Analyst) therapist in every class.


The concept was formulated when David took a trip with his father (who is also a practitioner of the martial arts) to Ohio, for the Arnold Classic. This is a competition that is put on every year for many different disciplines, karate being one of them. While waiting for his dad to participate (yes at 67 he still competes), He had the privilege to watch several students with special needs participate in Kata. A kata is a series of movements that are choreographed patterns of movements.

Martial Arts is something David and his father did together for many years, so it was only fitting that David would take the trip with his dad when he decided to compete in this huge event. While at the Classic, David saw something that both intrigued him and energized him. He watched while children with special needs competed in this competition and he saw the look of pride on not only their faces but their parents as well. David came home and immediately told Stephanie what he saw and he thought it would be amazing to start a program to teach martial arts to children with special needs in NYC, specifically children with autism and other developmental disabilities. David excitedly told Stephanie how martial arts has been proven to help with focus and discipline and self-esteem. Having grown up with ADD himself, David felt that martial arts really helped him feel empowered and helped him learn how to focus and stay disciplined. These skills carried over to the classroom and helped him become a better student as well. However, David knew from Stephanie’s stories and from interacting with Stephanie’s cousin that children with these disabilities learn differently. Many conversations later, Stephanie and David came up with a program that was unlike any other program currently available. They would co-teach the martial arts classes, utilizing both a modified martial arts curriculum and the techniques of ABA that have been proven a very effective methodology in instructing children with developmental disabilities. This program would combine the passions of both David and Stephanie and would potentially help many families with children on the spectrum.


The program has been designed for children ages 4 and up, but exceptions can be made based on each individual. We are located on the Upper East Side of New York City.

We can be found at however; the site is up but being worked on. We can also be found on twitter at Finally we can be found on facebook at


At this point in time we are still in the early stages of the business. We have only been open a few months, but as time goes on we would love to share our success more with you and your readers.

We just want to say thank you so much for taking interest in our program. It has been a long journey to get this off the ground and we have high hopes that Kicking The Spectrum will be able to benefit the special needs community. If you ever find yourself in New York City you have an open invitation

Tuesday, July 6, 2010

Autism Speaks

I'm sure this will be an unpopular post, especially among my autistic readers. Guess that's okay, it wouldn't be a good blog if I only said things people like.

Other autistics have questioned why I support Autism Speaks, both through Twitter and e-mails. I believe they deserve an answer, that took some thinking to phrase it correctly.

Autism Speaks has a rocky history with autistics, after all they used to be a group with the name of "Autism Speaks" while not having any actual autistic members. However, I honestly believe they are trying to change for the better, repair the relationship. They added John Robison, a well known autistic and author. As well as other steps and gladly answered an e-mail from me.

Here is the contents of the e-mail Q&A:
How do you think involving Mr. Robison in Autism Speaks has affected your organization?
John Robison joined Autism Speaks’ Scientific Advisory Board and Treatment Advisory Board earlier this year. He has been a great asset to our organization and in addition has posted some very insightful blogs on both our site and his own popular blog. John expressed his feelings about why research is important and what it means to him and the autism community – his insight has been great. We continue to be very pleased to have him onboard.

Has the response been overall positive or negative?
Overwhelmingly positive

What kind of actions is Autism Speaks planning or already doing to greater include people on the Autism spectrum?
Our new blog and facebook page has really opened us up to encouraging people to comment on all aspects of our mission. In addition, we invite family members as well as individuals on the spectrum to submit stories. John joined us this year at IMFAR and brought Wrong Planet’s Alex Plank, an adult with Asperger. They interviewed scientists, parents and organizers to learn more about the science. Alex has been posting portions of these interviews on his site. In addition, college student Kerry Magro has been hired by us to blog about events related to his major. He is on the spectrum as well and wrote about the Autism Speaks 400 in Dover, the NBA Awards event and many more. This has been a very natural progression for us as we hit our fifth year and it’s been very exciting to see this new collaboration within the community.
(e-mail exchange with Dana Marnane from Autism Speaks)

Are they perfect? No, of course not, they are a group of humans. I've yet to meet a perfect human. However, I think it would be in the advantage of the autism community to work WITH a large, well known group that seems to be reaching out to people on the spectrum. Realistically, I don't picture a parent of a nonverbal kid being very comfortable in a GRASP meeting or even relating much to it. However, they are likely to hear of Autism Speaks; because they do a lot of advertising. I'd really rather a parent go to them than go Google "autism treatments" and feed their kid some random snake oil. Or get so frustrated they do something they regret.

Autism Speaks is not my favorite group. I'm lucky enough to have a well developed Autism Society nearby who I can easily call or e-mail and get support from. (if you're in the Tidewater area of Virginia, that would be
Tidewater ASA ) However, I've heard from parents in other parents of the country that don't have a local Autism Society that they feel they can go to. (yes, my favorite group would be the ASA)

Autistics need to be a bit more tolerant of Autism Speaks; they aren't trying to be an enemy or exclude us; in fact they are trying to work with us.

(Comments are welcome, please refrain from cursing)

Wednesday, June 30, 2010

Neurodiversity or disorder?

I get asked about my views on Neurodiversity every so often. Yes, I do believe it's wonderful that there can be different kinds of human brain wiring. The world would be a pretty boring (and unproductive) place if we didn't have different kinds of minds. However, I don't agree that we should just label Autism a "wonderful difference" and end the conversation.

We live in a world where sometimes Neurodiversity gets in the way. A child who has no way of communicating needs help. We can still value his/her differences while teaching him/her ways to communicate with others. Perhaps through speech therapy or ABA. If it isn't hurting the kid, I don't oppose treatment for those things that prevent somebody from having a good quality of life. Yes, the kid may be happy at the moment, but 20 years down the road, it would be terrible if the kid was now an adult in an institution because somebody decided "hey, he's neurodiverse, let's not change a thing". A kid who is self-injurious or hurts others presents a problem and NEEDS help for their sake and their family's sake. It's just not reasonable to "let the kid be" in a case like this.

There's a fine line between helping somebody and trying to make them somebody else, so it takes a bit of thinking on what to treat and what is just "quirky".

And surprise, there are people with Asperger's who WANT treatment. I don't want a treatment, I feel happy where I am. But it's not my place (or anybody else's) to deny a person the right to seek treatment for what they feel impairs their quality of life.

I do however want to point out, I greatly dislike snake oil salesmen and people suggesting dangerous/unproven "cures" for Autism. No, it's not okay to put anybody's life at risk to treat Autism. Please do plenty of research from valid sources before trying anything.

On that note, make sure you read this if you are trying OSR#1, it is NOT safe:,0,747838.story

Some resources to check out treatments before using them:
Alternative Medicine (MayoClinic)

Autism's Alternative Therapies

25 signs of a Quack

Collection of resources for sensory issues

This post is a collection of resources for sensory issues; since many people with Autism have sensory issues.

General resources:
The Gift: A blog for caregivers of Sensational Children

Sensory Issues and Autism

Sensory Processing Disorder

Homemade Sensory Diet for the Summer

99 Sensory Activities for Any Child

Sensory Intergration Activities for Children with Autism

College and Asperger's/Autism

I just finished registering for classes at the local college and thought it would be a great time to write about college and Asperger's Syndrome/Autism.

For people uncomfortable with regular classes, many colleges now offer online courses; it is even possible to complete an entire degree online. Personally, I am taking college classes in person because I find not getting distracted while on the computer a bit tough! However, if the social anxiety is bad, it may be a good idea for a student with Asperger's/Autism.

Interesting enough, a nickname for Asperger's is "little professor syndrome" and CBS even had an article about college professors with Asperger's/Autism! So the idea of people on the spectrum at college is not at all strange, students can succeed with the right support.

One very helpful thing is for ASD students to get a chance to explore the campus before classes and have copies of a map. It helps with anxiety to already know where you're going without crowds and the pressure of getting to class on time. I'm already familar with the campus so that's one worry I don't have.

A good idea before picking a college would be to scope out whether they have disability services for students with Asperger's/Autism. Even if the student ends up not having many needs, it is important to have somebody to go to if needs arise.

Organization can be a huge problem for students on the spectrum. So, a wise investment is a planner for assignments and scheduling study time. College classes don't have a resource teacher asking "are you working on your project due X?" so it is important to write several reminders and break it down into steps. Perhaps even scheduling alerts in a phone would help.

Although it's too late to apply this year, there is a scholarship specifically for those with Asperger's/Autism:

Other useful links:
Asperger's at College
Sending Your Child with Autism to College
College and the Autistic Student

Friday, June 18, 2010

Sensory friendly clothing

Okay, first off, let me say I am not paid by, nor have actually owned these products. I am just trying to provide links to sites that look decent for sensory friendly clothing: Soft Clothing has clothes ranging from the casual to more dressy, all intended for kids with sensory issues. Prices seem to range $15-$30.

You can also find them on Facebook

And they have a social network:

Another site is here: Fun and Function Special Needs clothing
According to the site, their clothing provides all day sensory pressure. Sounds interesting and designs are cute:

Okay, yes, both of the above sites are child only, and of course their are adults looking for sensory friendly clothing too.

Forgive me, the only actual sensory clothing site for adults with SPD/ASD I could find was:

Sorry! If anybody has any suggestions, please feel free to comment or e-mail.

Teachers: Don't miss this!

I found this great post through Autisable called Setting Up an Autism Classroom on a Budget that has pretty good and well explained tips on how to set up an Autism friendly classroom on a budget. I think it actually makes perfect sense to publish it now, as you need to have an eye out for yard sales and store sales over the summer.

Other useful articles on setting up a classroom for ASD children:
Autism Classroom Organization
12 Tips for setting up an autism friendly classroom

Just a few random thoughts of my own:
*For goodness sake, keep the globes out of reach when wanting ASD children/teens to focus! I mean, maybe it's just me, but when I'm around a globe, I don't give a darn about what a teacher is saying. Seriously, in preschool you probably found me playing with the globe. And what happened in high school when the teacher handed out globes? Yep, spinning! You see in the movies when people go "Ooo, shiny"? It's kinda like that, except "Ooo, spin!"

*What on Earth is with giving people the wrong size chairs/desks? If a person can't *sit* without discomfort, how do you expect them to get anything done? I've gone in classrooms where I've been offered a chair not close to the right size. I actually notice in both myself and the kids in Sunday School that beanbags are easier, but that's not always possible.

*I love when the teacher has a schedule. Even when I took dual enrollment English (basically, college English in high school) I loved having a syllabus to know what was happening, when. I wasn't great at creating my own schedules, but they were appreciated. (Even when I insisted I hated them, I needed them)

Saturday, June 12, 2010

Autism and traveling

I was REALLY impressed at the kindness and thought put into this hotel suite to make it "autism-friendly":

The only thing I would add it to it was a light dimmer, but I love his attitude! I wish more business owners would be more active in the autism community.

Anyways, there are other things you can do to make traveling easier with an autistic loved one (or even if you're autistic yourself) :

*Don't cram a lot into one day! Often a Neurotypical person wants to jam pack a vacation full of activities but somebody on the Autism spectrum is easily overwhelmed by too much activities, especially since they are out of their routine.

*Create a plan and try to stick to it. Of course you can't help minor changes, but having it predictable can go a long ways towards making it easier to cope with.

*Explain the plan and consider having a copy, whether you use social stories or visual schedules. After all, it gives a sense of security to know what happenes next.

*Look up ahead of time resturants that will have food that meet dietary needs. Whether it's a GFCF diet or a picky eater, it helps to know ahead of time a good place to eat. Why cause stress over food when you're on vacation for FUN?

*Don't forget the first aid kit. medications, and medical info! Anybody can get scrapes or worse accidents but it seems like us on the Spectrum are a little accident prone. (I am!) So just be prepared, better not to be 100 miles away and realize you need a daily medication or forgot medical info.

*Try to schedule things that are part of the normal routine if you can. Maybe you know that the hotel has Nicklodeon and plays THE favorite show or everyday coloring is a favorite activity.

*Bring along a "car/plane/train treat bag". Okay, it doesn't take much to go to the dollar store and stuff a bag with stuff that amuses a kid. Wouldn't you rather shell out $10 to make a kid happy during a ride than deal with a screaming one for hours? If your kid loves something like DS games though, maybe check out the used ones, which can sell for under $10 and provide entertainment.

*Consider bringing an MP3 player or earplugs to block out loud/annoying sounds.

Of course, there are some people who, well, jusr don't like traveling. (I'm one of them, my idea of adventure is a new store in the city) But these tips make it easier.

Inspiration and further ideas here:
TravelMuse Tips
CNN travel tips: Autism
Walt Disney World and Autism Six Tips for Traveling with Autism

Curious whaf ABA looks like?

I had never actually seen what an Applied Behavioral Analysis session looks like so I looked it up. Anyways, this is a pretty short video of an ABA session. (By the way, I'd love to hear any thoughts on if this looks similar to what you've seen if you're familiar with ABA)

I have to say, as a little kid I would have done pretty decently with a session like that, other than I didn't like M&Ms much.

Cool and Eclectic store

I found an awesome store at Lynnhaven Mall in Virginia Beach, VA but they also have a website:

They have very unusual and interesting stuff at reasonable prices AND the person I talked to there is friendly (and patient). Generally no matter how much I like the items in a store I won't go back if it isn't friendly.

Anyways, whether you're looking for a piece of furniture or an accent to hang on your wall, it's a good place to check. I mean, I'd prefer a chair with a surprised crazy looking face than a plain one. If you're in the Hampton Roadss area or vacationing it's worth checking out. They do ship everywhere, so even if you're visiting from Oregon you can still get your items shipped to your front door.

Wednesday, June 2, 2010

Input from a parent on the Autism Spectrum

I'm very grateful to Vicky (outoutout from the Autism Women's Network ) for answering a few questions about being a parent on the Autism spectrum.

1) What is this biggest challenge(s) of being a parent on the Autism spectrum?

For me, the biggest challenge is dealing with my children's need for my attention. Sometimes I just need to take a break from 'everything', all stimulation, and unfortuantely that's not always possible.

2) How do you overcome that challenge(s) ?
By taking frequent, short breaks - usually in the bathroom! I've also involved my children in some of my relaxation/stimming activities, such as listening to music and spinning. They do the same, and we all stim together.

3) What do you wish other people would know about parents on the Autism spectrum?

That we exist. That we are capable of being functional just like everyone else. We may not do things exactly the way the rest of the world does them, but we do them just fine.

4) Is it hard to relate to other parents not on the spectrum?

For me, it is. With parents of children on the autism spectrum, I often find myself sympathising more with the kids than the adults. If I tell the other parents that I'm autistic, too, I'm treated differently, so I feel I've got to hide it. It also doesn't help that many of the other parents are 'yummy mummy' types who like to gossip about men and fashion, two subjects I just cannot feign much interest in.

5) What do you think communities could do to support parents on the Autism spectrum?

Hmmm not really sure, to be honest. Perhaps a bit more understanding is in order. Understanding that we're competent people, too. Reach out to us. Talk to us.

Really? This is a good thing?

Dr. Wakefield had a 'lovely' story at his anti-vaccine rally:
"About 15 years ago a mother from London approached him and said “Do not judge me too harshly Dr. Wakefield, but when I die I am taking my son with me. You see, I’m all he has. I’m the only one who loves him.”

“I didn’t judge,” said Wakefield. “I was moved by the love that a mother must have for her child that she would take his life rather than have him fall upon a society that really didn’t give a damn.”
(My deepest thanks and recommends to the
Autism News Beat for their post on his rally)

So....there you have it, Wakefield thinks it's a loving thing to kill your autistic child when you die. Why, oh why, do some parents have outrage over percieved dangers in vacciness but not their matryr flat out approving of killing autistics? The world is a tough place for autistics so we should improve it, not kill the autistics! Any decent human being, regardless of where they stand on the vaccine issues, should see how wrong it is to say this. Where's the outrage? It's one thing for a frustrated parent to say something at wit's end, it's quite another for a doctor to agree with them.

Sunday, May 23, 2010

Short graphic novel online about Wakefield

Ah, I love it. Want a review of the Wakefield case? (yes, it includes references too)

Check it out here by Darryl Cunningham:
The Facts In The Case Of Dr. Andrew Wakefield

Why I don't think Gary McKinnon should escape punishment

Gary McKinnon is the man diagnosed with Asperger's Syndrome who hacked into U.S. military and government networks. It seems many people think his Asperger's should let him avoid punishment. My opinion matches closely with what convicted hacker Adrian Lamo (who also has Asperger's) thinks:
"Lamo thinks while Asperger’s might explain his knack for slipping into corporate networks, Wired says that he scoffs at the notion that Asperger’s should mitigate the consequences of illegal behaviour.

He said that Asperger’s might help explain his success in hacking, but not his willingness to do it, he told Wired.

“If, in fact, the diagnosis is accurate, it had zip to do with my actions at that time,” he said."
(from TechEye )

I have a hard time believing Gary doesn't know what he did was wrong (and illegal). Letting him get away with hacking means he will probably do it again or disregard other laws. People with Asperger's are not stupid and are just as capable of being bad or criminals as neurotypicals. There's also wonderful people too on the Autism spectrum; but we have to accept some are not. It's not an isolated trend for Asperger's to be used as a defense in everything from murder to theft. The legal system and government needs to send a clear message that Asperger's is not a pass to ignore laws and commit crimes.

Saturday, May 1, 2010

Fluffshop on Etsy

Ack! I completely forgot to blog in April about this:

what is it? It's an awesome t-shirt design from Fluffshop on Etsy

They also have others, including:

Many many apologies to my friend at Fluffshop, it was unintentional!

Vaccine War: Love the show, hate the war

Okay, I loved Frontline: The Vaccine War. I really fail to see why the anti-vaccine side is offended either, it had plenty of their side. Not really PBS's fault that their side has little scientific evidence to go on. After all, they are the ones who use Jenny McCarthy as an advocate; it is not like PBS picked an obscure person to feature for their side. Seemed to have most of the main players. I don't think anybody was censored, they even had J.B. Handley on with his *lovely* language. (happy they censored the actual language though, I can do without that, thanks)

You can watch Frontline: The Vaccine Wars yourself here:

However....the annoying thing to me is there still IS a vaccine war. Why? We've seen study after study about vaccines and autism: no link. There is only so much money and time for autism research and advocacy. Why are people wasting it on vaccines? So many other issues are pressing: education support, respite, communication devices, sensory issues, safety, faith community inclusion, bullying, and on and on.

Studies all around the world have shown no connection between autism and vaccines. People are dying and getting ill from not having vaccines. From June 3rd, 2007 to April 17th, 2010 there have been 509 vaccine preventable deaths and 57,309 vaccine preventable illnesses. So not only are we wasting autism money and time; we are risking lives.

Please, please, vaccinate your kids, encourage others too. And autism community, stop harping on vaccines, it is NOT an autism community issue!

If you agree, please sign my petition to end the vaccine war within the autism community and move on to more important issues:

End the Vaccine War

(friendly remminder: No hate speech/cursing allowed in comments, that you need to send to my e-mail. Love you anways)

Saturday, April 24, 2010

Bad annoucement

Okay...this is a bit of a low blow by somebody (not sure who) but somebody has gone into my Twitter account and deactivated it. So, well, my new Twitter account is AutisticLady

Honestly, am I that disturbing that somebody needs to do that? To whoever did it: Get a life and you can't make me go away.


Interview with Liane Willey

I was delighted that Liane Willey, author of the book Pretending To Be Normal agreed to do an interview with me for my blog. Liane is a wonderful women on the autism spectrum who works to improve the lives of other families living with autism.

1) How did you handle finding employment and keeping it? Are there some tips you could share with other people on the Autism spectrum (and their families helping them) struggling with job issues?

It was very difficult for me to go to job interviews, but I forced myself to do what had to be done. Namely, I made resumes, practiced having interviews with myself in the mirror, and I made sure I had a nice outfit to wear to the interview so that my appearance was neat and appropriate. I cannot say this was easy. There were times I would put off going to the interview for days on end. The key to making myself go was to find a job I was qualified for. When I was 16 I was only qualified for fast food restaurant work so I applied, and got a job at, McDonald's. I applied for my position as a professor after I had my doctorate degree. I did not get every job I applied for and I was often terminated soon after the job. By the time I was in my late 20s, I knew teaching was something I was good at, so I decided to pursue only jobs where I could monologue or teach. My advice is simple: find what you're good at, pick an area you enjoy so you will stay motivated to do what it takes to obtain and keep the job, study hard and gain as much educational or practical experience as your budget will allow for, get experience even if it is as an intern or volunteer, and practice interview skills. After you do get a job, work with a job coach or counselor to make sure your social skills are of the sort your new career will demand. Finally, there is no shame in any job. I often took jobs below what I thought were my academic and experience level, but I learned something in each job, so no job was ever a waste of time.

2) What is the biggest issue facing the autism community today and how would you like it handled?

This is a tough question to answer. If I have to pick one it would be to reach the ASD affected minority, low socioeconomic and elderly populations with both ASD awareness and support programs. I would love the media to join forces and broadcast free ASD educational programs geared toward teachers, caregivers, families, and individuals. A network devoted to nothing but special needs would be great and our ASD community could have a strong voice and presence in this programing.

3) Do you have any tips for managing autistic mannerisms, like rocking, spinning objects, etc.?

I never try to break a stim or habit without having something in mind to take its place. When making a replacement habit, I try to find something that is very similar, but that may look less like a stim. For example, I like to rock, but I rock side to side, rather than forward and backward because it looks more natural- like a mother rocking a baby. And I still afford myself plenty of opportunity to stim as I wish, in private. Private may mean the back of a grocery aisle where there is no audience or a public bathroom behind the closed doors of the stall, but usually it means in my own home.

4) What can people on the spectrum and their loved ones do to keep them safe? How can a person on the spectrum figure out if a situation is "safe" or a person is "safe"? What are some red flags that a situation is bad?

I am not sure a person on the spectrum will ever be 100% able to stay safe and avoid bad situations. Our poor theory of mind and our inability to read non-verbal communications and judge hidden social curriculums make it nearly impossible to always judge a person's intent or a situation's risks. I do know that it is comforting for me to have a trusted person or two I can call the moment I feel like I might be close to something unsavory. I give myself permission to call one of my trusted friends the moment I feel unsafe. Regrettably, I still walk into bad situations, so I would like to refer readers to autism safety expert Dennis Debbaudt. His contact information is
Autism Risk & Safety Management now on FaceBook. Join us here:

5) When you're close to "melting down"; how do you handle it?

First of all, I had to learn by trial and error and many years of paying attention to my reactions, what would make me break down and how to avoid it. Now that I know what my personal buttons are, when I see the buttons are about to be pushed, I tend to go to the darkest part of my closet, close my eyes, shut out all noise, and concentrate on my breathing. If I don't' get myself out of the on-coming storm, I will surely get caught up in it and then I have to ride it out with either extreme amounts of anxiety, physical illness, or lots of tears.

6) What are some do's and not do's of dating? Is there any cautions you have? And what can a parent/caregiver do to help a person on the spectrum interested in dating?

In my perfect world, people on the spectrum would only date people they have been fixed up with by friends and family members! However, there are places and situations that are safer than others for making friends and building relationships. For example, don't toss a person with an ASD to a bar and expect the evening to go well. Family oriented centers like the YMCA rock climbing club or a local bowling league tend to be safer bets for meeting people who do not have ulterior motives in mind. That having been said, there are cruel people everywhere, so the person on the spectrum has to have a solid understanding of what constitutes good and inappropriate behavior and how to handle such behavior if it comes up. Remember that dating will often turn into something interpersonal, so don't underestimate the importance of sex education. Be direct in your discussions, leave nothing out. Discuss diseases, how they are acquired, pregnancy, the urban myths surrounding all the above, and the importance of knowing "no means no". Social coaching is a must in this area and at some point, I would bring in both males and females to talk as freely as possible about their issues, concerns, questions, etc. Let the person on the spectrum do as much self-analysis and questioning, and as much self-advocating and understanding as they can.

7) What is something about Autism that you wish everybody would know?
Yes. I wish people knew that everyone who has autism has a wonderful story to share. If people took time to really learn to listen to and learn from their autistic associates, I bet they would be surprised and delighted with what they learned from the person with autism.

8) Is there something you would like to tell parents/caregivers out there?

Take time for yourself. Shed any guilt you may have. Every parent/caregiver has moments of guilt over any human they tend to, so just know it's normal. Laugh as often as you can. Pick your battles. Know that things get better. Never underestimate the gifts your person with an ASD has. Keep the bar just high enough, and take care not to make it too low. Remember, the support you give is incredibly important and life saving. Without you, I shudder to think where folks on the spectrum would be.

Tuesday, April 6, 2010

Interview with an autism dad

Perhaps you've seen his many Tweets as TannersDad ; Tim Welsh is the dad of a kid with autism. He works tirelessly to increase autism awareness and is respectful even when we disagree. I asked him if it would be okay to ask a few questions for my blog, and he agreed.

1)What was it like when you first got the diagnosis of Autism for your son?

Tanner was "Officially Medically" Diagnosed at age 5... We had gone through Diagnosis of Apraxia of speech, Educational Diagnosis of Autism, PDD-NOS, and finally Autism. It was a process but we had to go through all the stages of loss. We were in denial, Angry, revengeful, grasping for justification and much more. I am still frustrated at the lack of help or explanation. When he was talking, Then got vaccines, & Lost his voice... the timing is suspicious....

2)What do you think the biggest issue surrounding autism right now?

Boy that is a tough question... I would say that the general publics apathy & inaction when it comes to Autism. It is right up there with the lack of services & Support. So many of the Autism issues are inter-related to current issues Health Care reform, insurance Reform, Respect, Restraint & Seclusion laws, Housing, Employment, & Need for answers.

3)What is something you wish other people would understand about Autism?

It is what you do not see that is the issue... These Individuals are some of the most healthy looking & Beautiful... But the stress, Strain , and need for help is immediate. Studies have show families dealing with Autism are under as much stress as those suffering form PTSD Post Traumatic Stress Disorder.

4)What do you wish autism organizations would do (or more of) ?

My dream & Vision is first & Foremost for all Autism Organizations to get on the same page... I started the twitter initiative #UWAC unity within Autism Community. We have much more that we agree on than disagree but sometimes arguments flood the airwaves. To me Awareness, Respect, Services, Employment, Housing, Human Rights, Respite, & Answers all need to be on the front burner.

5)What has helped your son the most?

Love from family. We have a great need for ABA therapy and pray one day that we will have the resources to provide that for Tanner. We are blessed that he has a personality akin to what I imagine Jesus to have. Calm, Happy, Loving... Just beautiful.
You can get in touch with Tim here:
Cell:217 260 3098
#HDTJ #APE #FeelAutismYet #FAY #AutismABC #TAhml #Truthfirst #MTHA #BFH #1in58 #autism

(Yes, he did give permission to give out contacts, don't worry!)

Through My Eyes - Thanh Bui

Monday, April 5, 2010

No, Age of Autism, autism is NOT like cancer

Amazed. Horrified.

These are both my feelings after a recent Twitter set of Tweets by the popular blog Age of Autism:
AgeofAutism: "Even if my girls WERE too old for an autism cure - I'd NEVER deny the possibility to another family. Would you? #AofA"
AspergersKitty: "@AgeofAutism My concern is how dangerous some "cures" are. I wouldn't get a cure myself;but if it was safe I wouldn't stop consenting others"
AspergersKitty: "@AgeofAutism Provided it's safe/science based; a cure is a deeply personal matter for the autistic individual and their family."
AgeofAutism "@aspergerskitty How dangerous is chemo for cancer? Risk/benefit based on severity of diagnosis. Of course safety 1st."
AspergersKitty:"@AgeofAutism Did you really just compare autism and cancer?! Wow. Well,not enough space here,but I will respond in my blog why that is WRONG"

Cancer is a deadly disease; autism is neurological condition that can cause both problems and benefits. I understand there are people severely affected by autism who need help. But risking death in order to treat autism is just not okay. Those with severe forms of autism are most in need of people's protection from dangerous therapies based on lack of scientific evidence.

It frustrates me when groups like Age of Autism and Generation Rescue have an attitude of promoting dangerous treatments. Of course they can say whatever they please, but ethically, there is a responsibility to protect those who cannot protect themselves. Both groups are in an incredible position of power by being trusted by parents. I wish I'd see them take a stand and say no to dangerous procedures. Just imagine how great it would be to see Generation Rescue, Age of Autism, Autism Society of America, Autism Speaks, and GRASP working together to get support services like respite, speech therapy, occupational therapy, communication devices, and other safe treatments; while taking a stand and saying NO, it's not okay to risk lives with procedures like chelation.

My heart aches when I hear about innocent kids undergoing dangerous treatment. I feel like if I say nothing; it would be standing by while a child is being abused. Because, that's what it is. Risking a child's life on a treatment like chelation is abuse. I know I'll probably get angry mail about this; but why is it okay to do things like this to autistic kids? People would get arrested for doing it to a neurotypical child, why is it okay to do it to an even more helpless child?

One can wish for a world where children are safe from "professionals" and nobody justifies risking their lives for improving a neurological condition.

One can wish.

Sunday, April 4, 2010

How to Spot the Signs of Autism

A great, easy to understand video on how to spot the early signs of Autism:

Happy Easter!

Have a great Easter everybody!

Monday, March 22, 2010

Vaccine answers

I know many people are concerned about vaccines and have lots of questions. I'm not a doctor but I can tell you that a celebrity or salesperson of a "alternative" treatment is not a good source of information. Vaccines are a big deal too, not a minor thing to skip. I recommend you visit to find answers to questions like:
*Are they safe?
*Why should you follow the recommended schedule?
*What's in vaccines today?
*Do they cause Autism?

And other questions. The site is easy to read and navigate and even includes a video FAQ with videos like this one:
Research on vaccines and autism

Sunday, March 21, 2010


I was disappointed to hear one of the kids in the church class I help in was out because of bad allergies. I'm lucky that I don't have any allergies, but it seems like many people don't share my luck! So I figured I'd do a little research about allergies.

I knew about the pollen count already; which is how much pollen there is in the air. (the higher it is, the worse allergy sufferers will feel) It did not occur to me that trees and grass could cause allergy problems, I just assumed it was flowers. Also, I didn't know the pollen count is lower on rainy days and worse on windy days.

There are many different over the counter treatments you can try:
-Antihistamines reduce sneezing, sniffling, and itching by lowering the amount of histamine (the substance produced during an allergic reaction) in the body.
-Decongestants clear mucus out of the nasal passageways to relieve congestion and swelling.
-Antihistamine/decongestants combine the effects of both drugs.
Nasal spray decongestants relieve congestion and may clear clogged nasal passages faster than oral decongestants.
-Cromolyn sodium nasal spray can help prevent hay fever by stopping the release of histamine before it can trigger allergy symptoms.
-Eye drops relieve itchy, watery eyes.

However, big note: It's still a good idea to talk to your doctor, to see what is best for your kid or yourself; they may even recommend a prescription medication.

There are natural options; but be very cautious before assuming a herbal remedy is safe because it says "natural". If you are on other medications, it can react badly with some herbal treatments.

One suggest from the WebMD site is nasal irrigation:
"Nasal irrigation with a combination of warm water, about a quarter-teaspoon of salt, and a quarter-teaspoon of baking soda may help clear out mucus and open sinus passages."
The pros and cons of nasal irrigation

One last interesting thing from WebMD was the suggestion of lots of spring cleaning; often. If you're the one cleaning and have allergies, wearing a mask is a help.

Of course I'm not a doctor (and you really should talk to one if it gets unbearable); but hopefully some of this can provide a bit of help.

My information from WebMD is from here:
Spring Allergies

Other links that may be helpful are: guide on allergies
-Preventing Spring Allergies by Mayo Clinic
-Seasonal Allergies by Physician's Desk Reference

Thursday, March 18, 2010

Why does the sun shine?

"Why does the Sun Shine?" by They Might Be Giants (found the video on )

Wednesday, March 17, 2010

Got something to say?

In April I am making an effort to include all sorts of opinions and interviews about Autism. So if you have a story to share, an article you want me to post as a guest post, or feel like I should interview you, please let me know. There are two rules: it must be about Autism and you may not use obscene language. Please be reasonable about length too.

I won't edit any articles; although I will put a disclaimer about it being your opinion and not mine if it is something I don't agree with.

Also, if you have a question you'd like me to answer or address; let me know. (either in the comments or by e-mail) I'll make an effort to answer them.

Oh, and if your blog is blogging about Autism in April, I'll be happy to link to you.

I have lots of great stuff coming up for April; ranging from fascinating interviews (including one with Liane Holliday Willey; the author of Pretending to Be Normal); giveaways of autism themed products, reviews, and who else knows what else. I've been busy getting things ready!

Sunday, March 14, 2010

Autism and why you shouldn't rush to conclusions

Friday, March 12, 2010

GFCF can be yummy

I'm not on a GFCF diet but I know many families out there in the autism community are. So I poked around the Borders Gluten Free section. I found recipes in the Enjoy Life cookbooks that are so delicious I wanted to go make some myself! (honestly, the company has no clue I exist but I feel like sharing their books with everyone!) One nice thing about the recipes in all of their books are about a page long including pictures, no huge complicated ones.

Here's a glipse at some of their books and recipes in them:

Allergy Proof Recipes for Kids by Leslie Hammond-Pancakes
-Several kinds of frosting
-Cakes, including "Cream"sicle Cake and carrot cake
-Homemade Marshmellows
-Many "meal" items besides desserts

Cookies for Everyone
-Gimme S'more Bites
-No Bake Cinnamon Rolls
-Chocolate Chip Cookie Bar
-Sensational Snickerdoodle Cookies
-and of course lots more cookies!

Cupcakes for Everyone
-Chocolate Chip Scones
-Chocolate-filled Vanilla Cupcake
-Blueberry Crunch Muffin
-more cupcakes and muffins

Thursday, March 11, 2010

Hamster video

This is not my hamster, just a video on Youtube I love. (and I have writer's block today)

Wednesday, March 10, 2010

Online resources for parents

I just wanted to list a few sites that will help parents of special needs individuals:
Special Mom Talk(dads can join too!)

and I'd like to point out that the Autism Women's Network always welcomes family members and friends of those on the autism spectrum.
Autism Women's Network

If there's a site you would like to share for other parents, please leave a comment, I'm sure others will appreciate it.

Tuesday, March 9, 2010

Book Review: Born on a Blue Day by Daniel Tammet

I literally liked this book some much I read it all in one day.

"Born on a Blue Day" is a memoir by autistic savant Daniel Tammet; who also has synesthesia. (synesthesis is when your senses are a bit crossed; like associating colors with numbers or hearing tastes)

I could relate to some of the things in the book, like prefering nonfiction over fiction; the tendency to hoard 'odd' objects, and the struggle to become independent. In fact, I'd love to be as independent as his is; where he has gone to many countries and runs his own language teaching website. I actually laughed when he mentioned his hatred of brushing teeth but doing it anyways. People don't talk about that much, but I can relate! I do get confused when he starts talking about math equations. (I'm terrible at math) However, I love how he puts this to good use. Since he had seizures as a child; he helped fundraise money for the National Society for Epilepsy by reciting 22,514 digits of pi, which beat the record for England. He does various other things to increase awareness and help out others.

He astounds me by his ability to not only learn over 5 languages but use them to express how his mind works.

Overall, I'd say it's a great book if you are an adult on the Autism Spectrum, want a good read, interested in savant syndrome, or are interested in adults on the Autism Spectrum.

Monday, March 8, 2010

You've got to see this!

Okay, I was wandering around on YouTube and found this video, and wanted to share it. Make sure you watch it until the end, otherwise it's a depressing video.

Sunday, March 7, 2010

Don't Forget!

It's never too early to prepare for April, which is National Autism Awareness Month. There is many different activities you can plan for April. Here are a few suggestions:
*Hold a bake sale or car wash to raise money for your local Autism Society of America (they help people ALL year long, not just April!)
*Plan to write an article in your blog in April about Autism
*Call or e-mail your local Autism Society of America to see what events they have planned and see if they need volunteers
*Rent a movie about Autism to watch with your family and discuss (Some suggestions would be Miracle Run, Adam, or Mozart & The Whale)

You can find your local Autism Society of America through this site:
Find State

Or you could pass around this video:

Wednesday, March 3, 2010

The good and the bad of autism community meetings

First, I'll say the bad; it does not actually involve me but makes me angry. You remember me recommended the blog Autism News Beat ? Well, it is run by a parent of an autistic person. So logically, you would think they would be welcome at a Talk About Curing Autism Now meeting after paying $50, right? No, they denied access to them because they were "disruptive" at the last meeting. Apparently, having a dissenting opinion about vaccines and autism is "disruptive". I fail to see what sense this makes, and besides, if TACA has solid proof of the "vaccine connection", wouldn't they jump at the chance to prove it to somebody who runs a well read site about autism?


And the good: I was delighted to be invited to attend Virginia Beach's Autism Stakeholders Meeting. Basically, it is a group of people meeting to find out what resources are already out there in Virginia Beach and brainstorm what needs to be added and improved. I am just over the moon happy at how JoAnn Bryant from the Autism Society of America felt I would be a good contribution to the meeting. I have to say, everybody at the meeting was respectful to me and valued my opinions. I wish more organizations would try to include people on the Autism spectrum in important meetings like this.

I learned quite a few fascinating things, including that the public schools are teaching fourth and fifth graders about Autism in order to lessen bullying. I also learned a lot about different resources out there in Virginia Beach. I will be researching them in more detail and writing about them.

Also, if you are looking for resources in the local Hampton Roads area or in the United States, here is the link:

Monday, March 1, 2010

Want to attend church online?

Do you want to attend church but just can't seem to find one that "clicks" with you? My church has started to put their 11am services online. It's a contempoary Baptist church, with entertaining services. Give it a try here:

Saturday, February 13, 2010

A few science/autism blogs I like...

My blogging may be spotty for a while, so I thought I should share some of the places I like to read so you have something to tide you over:
Autism News Beat An autism news blog that also tends to cover items in relatively short posts and plain English. (a good alternative to the certain popular anti-vaccine autism news blog)
Gets techinal, but good anyways and not all autism news.

Sunday, February 7, 2010

Giveaway winner!

The winner of the Lee's Crossroad Candles giveaway is...Rebecca Graham!

Wednesday, January 27, 2010

Sad cyberbullying story,2933,583948,00.html

Police suspect cyberbullying may be the cause of 15 year old Phoebe Prince's suicide. Now here's the part that REALLY makes me mad...bullies continued to post insulting messages on Phoebe's Facebook page AFTER her death. Bullies had taunted this girl through Facebook, text messaging, and other media. Really, this story is sad and makes me pretty mad.

Facebook's page on what to do if you are being harassed/cyberbullied can be found here:
Facebook Help

You can find additional free help here:

A video from them for kids/preteens about what to do to prevent and deal with cyberbullying:

Saturday, January 23, 2010

Autism Women's Network

There's a great resource out there for anybody concerned with issues of women on the autism spectrum. It's called the Autism Women's Network. I asked Sharon daVanport; the AWN's Executive Director &
Radio Show Host; if she would mind answers a few questions. She was more than happy to:

How would you describe what the Autism Women's Network is?

Our mission is to provide effective supports to autistic females of all ages through a sense of community, advocacy and resources.

The Autism Women's Network is a networking community of autistic females, their families, friends, and supporters who can share their experiences amongst a diverse, inclusive, and supportive environment. Our website publishes wide variety of articles relevant to the autism community as a whole. Some of the articles are original stories and others are contributed to AWN from our members who originally posted them on their blogs or web pages. Please let us know if you are interested in submitting a story to AWN; we are always interested in reviewing material from Contributing Writers. You can reach us at: AWN Contact Form.

What inspired you to create the Autism Women's Network?

With a diagnosis of Asperger's, I made most of my initial contacts with the autism community through primarily Asperger's Groups. For the better part of 2009 I was continually challenged to raise awareness for all females on the spectrum as opposed to only those with AS. It didn't take me long to realize that I was better suited for a more inclusive environment.

In addition, an overwhelming consensus from females on the spectrum was their desire to be part of a non-judgmental networking community. They believed it was essential if they were to continue moving forward toward solutions and answers pertaining to matters specific to females. We looked hard at the issues which had not been working in the past, and we developed a strategy to move forward in a new and positive direction.

You must be very excited about the official launch of the forums! Who would you encourage to join the forums?

Most definitely females on the spectrum. In addition, family members, friends, educators, psychologists, and anyone in a supportive role to females on the spectrum.

Typically the males who join will pop over to the forum & say a quick hello with a brief introduction. It's nice to have a show of support from others in the autism community who may not intend on utilizing the forum personally, but will take the time to send their encouragement and well wishes our way.

What kind of topics are discussed on the forums?

AWN Forum topics are designed to inspire meaningful discussions which focus on issues relevant to females on the autism spectrum. It is our goal to successfully accomplish a portion of AWN's mission by building an interactive community whereby these discussions can take place.

Some of the forum topics are: Ask a NT, Special Interests, Art Gallery, Potpourri, Parent's Palace, Bullies and toxic People We Encounter, and many more. A few more topics which cover discussions on food, autism news, and relationships are:

Bon Appétit Share your favorite recipes, cooking tips, GF/CF info., & all things food related.

Extra! Extra! Read all about it... Autism news around the world.

Relationships A place to share your experiences, advice, & suggestions regarding family, dating, friends, & coworkers, etc.

An new addition which is coming soon to our forum is E-Mentoring. This will be under the leadership of AWN's International Director form Australia, Katharine Annear. E-Mentoring will give people the chance to have one-to-one support, advice and guidance from a volunteer who is independent from their ordinary life.

E-mentoring allows mentors and mentees to keep in touch by having conversations online, through a website. The mentoring relationship is facilitated by a safe and stimulating web-based environment (AWN Forum) which allows mentors and mentees to:
• Post messages
• Share information
• Discuss news items
• Access resources

** We are finalizing details on another Discussion Board for the Forum which will address issues of domestic violence, abuse, and the vulnerabilities of females on the spectrum as it pertains to these serious matters. Stay tuned for these additions to the Forum coming soon.

What is your online radio show about?

AWN Radio allows our organization to keep the lines of communication open pertaining to autism news, hot topics, authors, parents, educators, and individuals on the spectrum who come from all walks of life. AWN Radio allows us to reach a larger audience with participation from our listeners via the chat room and phone lines.

Though we strive to keep our programming consistent with our mission, we aren't exclusive to topics pertaining to only autistic females. We definitely have a diverse guest list which include males, females, autistics, and neuro-typicals.

Do you have any events coming up?

AWN is currently planning a few community events for April during Autism Awareness Month. Details will be posted on our website just as soon as the events are finalized.

Several AWN Directors will be speaking at conferences, workshops, and support groups throughout 2010. The Autism Women's Network will also be in attendance at numerous autism functions for networking purposes throughout the year.

Considering the statistics of only 1 in 4 autistics being female; do you think autistic women's concerns are taken seriously?

I believe we are slowly making progress in this respect; however, it is undeniable that we still have a long way to go.

AWN is dedicated to educating others about the unique qualities specific to autistic females. Recognized experts agree that furthering our knowledge specific to these issues will lead us to a greater understanding of the spectrum as a whole.

It would therefore benefit all of us to heighten awareness with regards to these matters. AWN is dedicated to keeping the focus on matters specific to females on the autism spectrum, and we extend an invitation for our community to join us.

Friday, January 22, 2010

Sensory Processing Disorder: Not Just Spirited book giveaway and interview

Due to unexpected move and low entry count; this giveaway has been extended until JUNE 1st, 2010. Thanks for your understanding!

Today I'm delighted to bring an interview and giveaway from Chynna T. Laird, the author of "Not Just Spirited: A Mom's Sensational Journey With Sensory Processing Disorder". When I first found out about the book, I was interested, being as I myself have sensory issues and many on the autism spectrum do. Although my issues are related to Autism and Septo-Optic Dysplasia, I enjoyed reading the book. One thing I loved about it was it's 'real' but hopeful; and never suggests anything that could harm a kid. Anyways, on with the interview! (Giveaway details at end)

1) What inspired you to write "Not Just Spirited"?

Not Just Spirited started off as journal entries. I’ve always been someone who journals away anxieties or worries or simply to get thoughts down on paper. When you go through something where people around you either don’t ‘get’ what you’re saying or aren’t listening, you have to have a positive way to work through those emotions or they’ll eat you alive.

Whenever we hit a frustrating point I thought. “You know, there just have to be other parents out there going through this stuff. And that’s just not fair!” I swore that once we got over our major hurdles, I’d do what I could to help other parents get to the information they needed. That’s when I put the journal entries and stories into a book form. Our story isn’t the same as other peoples’ are—it’s our unique experience. But the emotions we felt as parents are fairly common—frustration, isolation, worry, stress, not understanding what was happening to our baby, etc.

If anything, the book can help validate those feelings and, at the very least, inspire parents to keep going on their path…to keep moving forward.

2) What were some of the signs of Sensory Processing Disorder you noticed?

As you know, there are many symptoms and no two children show the exact same ones. And it wasn’t until much later that we figured out what her odd behaviors meant. When we first brought her home from the hospital things weren’t as noticeable but she startled easily, cried a lot, turned her head away from us when we spoke to her and fussed when we held her in any way other than laying her on top of a pillow and walking around with her.

By the time she got to three months old, she cried most of her day. She was a terrible sleeper because every tiny noise woke her up. She needed to be in constant motion and not just gentle rocking. We had to go full force, almost like the motion where you’d be swinging them to toss them onto their bed or something soft, you know? As she got older, her signs got stronger:

she covered her ears all the time, even when noises weren’t that loud (eg: diaper tabs)
she gagged around new smells or actually smelled things that shouldn’t be smelled (eg: clothes, cooking utencils, etc.)
she fought us with every single hygiene task, like bathtime, getting dressed, brushing teeth or hair
she avoided playing with toys that were noisy, flashy, played music, popped out at her, felt funny or smelled.
She avoided playing with other children or people.
She was clutzy, held things too tightly, broke things easily (I can’t count the amount of crayons we went through!), or didn’t hold things tightly enough.
She often lost her balance or tripped on things that weren’t there.
She often scratched at her skin or eyes, pulled on her ears or nose, hit herself in the head, pulled out her hair, and actually tore clothing right off her body.

Later on, her need for routine was so rigid that she had to have everything in an exact place or she freaked out until it was. If we missed a step in a usual routine, she couldn’t go on until we re-did that task. Her sense of touch was so sensitive that it affected what she wore, who could come near her, what she ate and what she played with. She couldn’t seem to get her hands to do things the way she wanted them too (using a fork or spoon, doing fine detailed crafts, writing or games with tiny pieces.) And she needed visual cues or pictures when you taught her something new or explained something to her or she didn’t seem to ‘get’ what you were talking about.

It wasn’t the quirks she had that made us wonder. It was the severity of them, the duration of her fights when things bothered her and the fact that one day something that bugged her to the brink of a fit lasting hours one day didn’t even seem to phase her the next—some days it was hour to hour!

I was so relieved to finally figure out what it was so we could build from that understanding.

3) What were some solutions you found that worked?

It took a long time figuring this out but what finally worked was exposing her to things. Honestly! Now, I’m not saying we shoved her hands into pumpkin goo or made her touch shaving cream right off the bat! We learned that slowly exposing her to sensations then giving her the tools to cope with how those sensations made her body felt was the best solution for a girl with such a high sensitivity level and such a wide range of sensitivities.

Some days she still avoids things, which is fine. But we always encourage her ‘just to try’ then guiding her to a safe place to calm down.

Things that worked for Jaimie are frustration balls (we call them “squeezy balls), fidgets, chewy toys, hammock swings (we have three different kinds of swings to work with what her needs are at a given time), headphones, textured cushions, mini-tramps and deep pressure massage.

Another form of therapy that worked for Jaimie was Integrated Learning Systems, or iLs, incorporated into her SPD OT. Most importantly was sticking to a regular Sensory Diet, including balancing out her nutritional needs, and maintaining her routines.

We also have A LOT of calendars in our house that we use to work Jaimie through upcoming events, pictured charts to work her through new tasks and stickers for EVERYTHING to put up on calendars. It’s amazing how little things like that make such a huge difference. When she knows something is going to happen and understands the steps involved, she handles it so much better.

4) What did you try that didn't work?

Play Therapy worked with helping Jaimie learn to use play as a way to communicate because for the longest time, she wouldn’t communicate with us at all. She didn’t even try speaking until she was way over three. We realized later on that was because communicating with us meant we had to do it back to her and she wasn’t always able to handle that interaction. But after a year, it stopped working. It was because there was no focus on her SPD needs.

In home therapy was great with initial assessments and stuff but that wasn’t the right choice for Jaimie. There was no separation from her therapy and her safe place, you know? Once we chose therapy outside of our home she was much more receptive to practicing her Sensory Diet.

Psychiatric therapy and drug therapy were suggested right off the bat. Of course, they were just focusing on her behaviors, not the underlying causes of those behaviors. We were told to put Jaimie on anti-anxiety and anti-depressants when she was only three years old! We aren’t ‘anti-drug’ and know that it works with some kiddos who have additional problems but we refused to use drugs for a disorder when we had no idea how those drugs would affect her nervous system. We filed such treatments as a last resort after trying other holistic approaches.

‘Sterile’ therapies where Jaimie had to be in a hospital environment or ‘observed’ by several professionals all at the same time didn’t work either. Jaimie reacted best to one person in a warm environment working with what she was comfortable with then slowly introducing her to new things.

5) What were some reactions by doctors and professionals to the sensory problems?

This is a great question. In the beginning, all we wanted was for someone to just listen to our concerns, tell us what was going on then put us in the direction to figure out how to help Jaimie. But people weren’t understanding our concerns. We were told that she was ‘just spirited’ or ‘testing her boundaries’ and that everything would work out. It never did. It wasn’t until Jaimie had a sensory meltdown so severe that she injured herself, me and her baby sister at the time (not purposely but when you’re throwing yourself around with your eyes screwed shut and screaming, you don’t look around you.) that our pediatrician finally got on board with us. He’s an amazing doctor, very supportive (now) but it was a long, frustrating road.

After her initial assessment by an occupational therapist (OT), we were guided to a local community resource. At first she dealt mainly with a Play Therapist but the psychiatrist who headed Jaimie’s case was very “pro-drugs” and tried convincing us to consider drug therapy. We wouldn’t. She diagnosed Jaimie with severe anxiety (Separation, General, Social anxiety and obsessive-compulsive disorder, OCD) stressing that for a child with her level of anxiety, she needed help in order to focus on the therapy at hand. We kept refusing.

After a couple more years, we found out about a fantastic SPD clinic here in our city (YAY!) and decided we were going that route. The psychiatrist wasn’t happy about our choice. She felt that Jaimie’s anxiety hadn’t gone away the entire time she’d been at the clinic and that if we ignored her anxieties, she’d only end up getting worse. Her exact words to us were, “Jaimie has severe anxiety, Chynna. Yes, she has sensory issues and the anxiety and those issues seem to work hand-in-hand—each one affecting and intensifying the other. But those SPD OTs only see the child through sensory lenses—everything is because of SPD. At some point, you will both have to realize that your child has a mental illness and that you need to get her proper care. Just be open-minded to drug therapy.”

Let’s just say that was the last session we had there. The point of me sharing that with you is that parents need to see their child as a whole and be sure that whoever treats their child sees her as a whole. If you don’t meet every angle of your child, she isn’t going to thrive. Once we ‘got’ that Jaimie had SPD but also needed help with her nutritional needs and anxiety at the same time, we focused on all areas and she started doing much better.

6) What should somebody do if they think their kid or themselves have Sensory Processing Disorder?

The first thing to do is write down everything—symptoms, triggers, what calms the child (or themselves)…everything. Then research places in his area who deal specifically with people who have sensory sensitivities or SPD. If you have trouble finding someone in your area, visit the American Occupational Therapy Association ( or the Canadian Association of Occupational Therapists ( or even the SPD Foundation ( to find someone. It’s very important to find an OT who is specifically trained, for years preferably, with people who have sensory issues. If you’re looking for your child, find a person who has experience dealing with children or focuses mainly on pediatric OT.

Once you figure out your child’s, or your own, specific needs things can start getting better.

7) Do you have any other tips that could make life easier on someone dealing with sensory processing issues?

Even with therapy and the Sensory Diet in place it can still be a trying time helping our child cope with SPD. Basically, patience is key. Go with what works at a given time then change things up a bit when you notice your child isn’t using the same tools or exercises. My good friend, Lori, tells me to watch Jaimie with ‘sensory glasses’ on. That’s how you can tell when something sensory is going on that needs action or when she’s just being a grumpy seven-year old testing her boundaries. Because above all else Jaimie is just a little girl.

Parents, or adults with sensory issues, would do great connecting with other parents. That helps ease feelings of isolation or frustration. Sometimes just talking to someone who understands what you’re going through—whether on the phone or online—can be enough to make you feel better.

You can find Chynna's blog at

I received a copy of the book to review, but also one to giveaway!

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