Category Archives: Misc. Autism topics

April Announcements Vol. 2

Here’s an interesting program that I’ve been asked to post about for Autism Awareness Month:

“Ask.com is now featuring a new homepage theme every week in April for Autism Awareness Month, designed to educate consumers about autism, a complex neurobiological disorder affecting one in 150 people in the U.S. Ask.com donates $.50 to Autism Speaks for every new consumer who selects the Autism Speaks Skins as the design for their personalized Ask.com homepage. The Skins display a series of questions that challenge consumers’ understanding of autism; for each correctly answered question, Ask will donate another $.01 to Autism Speaks.

“Consumers don’t have to spend a dime to support this important cause. Simply choose one of the Ask.com skins designed especially for this initiative, and we’ll make a donation – it’s that easy,” said Jim Safka, Chief Executive Officer of Ask.com.

The Autism Speaks Skins feature photos of children with autism as well as original art by Andrew Bianchi, a 10 year-old boy with autism from New York. Every new homepage skin generates four questions and several answer options. Consumers can use Ask.com at any time to find the answer to a question; simply answering a question correctly is counted towards the total donation amount. Ask.com is promoting this special program directly on the Ask.com homepage several days throughout the month of April, as well as in the Ask.com Skins Gallery at www.ask.com/skins.

“True to their reputation for innovation, Ask.com has created a unique program where everyone wins: we gain awareness and support for our cause, consumers gain knowledge about autism through an engaging and thoughtful user experience, and Ask.com has an opportunity to connect in a meaningful way with consumers who also care about this cause,” said Scott Leibowitz, national director of corporate relation for Autism Speaks.

April Announcements

I’ve been contacted by a few companies/organizations that would like to get the word out on Autism Awareness Month happenings, so I thought I would post a notice about them to let everyone know.

First up is TRP Wellness! This company features DVDs on OT/sensory issues and yoga instruction for special needs children, a section with tips and resources, a blog, and a newsletter. From now until April 30, in honor of Autism Awareness Month, their OT/sensory issues DVD series is on sale at 20% off! Just enter the code “April2009” at checkout.

Next, Autism One would like to announce that May 20-24 they will host the “Change Has Come” conference in Chicago, Illinois. This conference is a great opportunity to learn more about what you can do to immediately start helping your child, confidently and economically navigate the medical intervention terrain, learn how to talk to your pediatrician to get the tests your child needs, and meet other parents. Click here for details.

Lastly, be sure to check out all the events that your local chapter of the Autism Society of America has planned for Autism Awareness Month. For instance, here in Oregon, the Autism Society of Oregon is hosting the “Take a Break on ASO” program, which gives gift cards for dinner out and a movie, with reimbursement for 4 hours of respite care! They also have many other activities planned for the month. If you’re not sure of your state’s website (some states have more than one chapter), go here to see a listing of contact information for each state. Have a great April!

Doing More

Advocacy is important to me – it’s part of why I blog. I also want to teach my kids that we’re here to help each other out. I encouraged Nigel to participate in a Habitat for Humanity walk last year, he does Scouting for Food with Boy Scouts, and he and Aidan often go with me to donate to local charities. In that vein, promoting autism awareness comes naturally to me.

My good friend and fellow blogger, Jenn at Devin’s Journey, wrote a few days ago about today being World Autism Awareness Day. I love the thought of that, seeing as autism knows no political borders. Not only did Jenn remind us of the day, she asked what we were doing for it. Aside from my ongoing campaign to eradicate the r-word from my workplace, I thought of more that I could do.

First of all, I’m doing something close to home, because there is still so much that needs to be accomplished right in our own backyard. So today I’m going to email the principal at Nigel’s school and restart my wheel-squeaking about implementing a Circle of Friends program there. I had sent the principal a link to the ABC News autism page, which features a video that discusses ASD and bullying, and how beneficial the Circle of Friends-type of program has been for the school in the video. I sent the link in an email almost three weeks ago and haven’t heard back yet, so it’s time for some serious squeaking.

I also think that today is the perfect occasion to announce my plans for this summer. I have posted previously about Knowledge for People, a non-profit dedicated to autism education and outreach for developing countries. In July, they are going to Nepal, and I am thrilled to be joining them (!) as a parent liaison and sensory issues presenter. It’s one of those “opportunity knocks” situations – my boys are with their dad in July, I’ve always wanted to go to Nepal, and things just came together, as they so often do when something just feels right. I am so excited to be doing this! Not only to have the opportunity to go to Nepal, but to have the opportunity to help others understand autism and learn how they can help their children in a place where knowledge and resources are so limited. With all the hurdles we face here in the US with getting services for our children, at least the services exist, at least people have heard of autism. At least we can do something for our kids. All parents – everywhere – should be so fortunate.

It’s a done deal, folks. I’ve got my tickets, my backpack, and my spirit of adventure. Just doing my part for World Autism Awareness, one country at a time.

An Easier Interview

In case you haven’t had your fill of me yet, I’ve been featured in another interview. This one was far more enjoyable for me than my TV appearance! Deborah at 5 Minutes for Special Needs was kind enough to ask me a few thought-provoking questions, and I was only too happy to answer them, especially since I wasn’t being filmed! So if you’d care to mosey on over, check out my interview with 5 Minutes for Special Needs, and check out the site while you’re there, if you haven’t already. It’s a great resource for fun and practical ideas and inspirational stories. Thank you, Deborah!

Someone’s Listening

Too often, we feel like we’re talking ourselves blue as we try to advocate for our special needs children. It feels like no one’s paying attention, like the only people who care are the ones who are in the same shoes. It doesn’t seem like anyone who could really make a difference is taking notice. Well, someone finally did.

I got home from work yesterday and showered, getting ready to go see a movie with a friend. As I was preparing a quick dinner for myself, the phone rang. I answered, and it was someone from our local news station requesting to come and interview me (!) about “the new Oregon Commission on Autism Spectrum Disorder that was created by the Governor today” (!) “Wow,” I said, grasping for a semi-intelligent response since a) I hadn’t managed to catch any news yet and had not heard about the Commission, b) they’d probably gotten my contact info from the Autism Society of Oregon since I’m a Chapter Rep, and I didn’t want to sound completely ignorant, and c) I’d never been interviewed by the news before. (!) To be on TV. (!) At least I had already showered.

After we set up a time to do the interview, I ran around cleaning the living room, of course. Then I did a quick search to get some info on the Commission and our illustrious Governor here in the beautiful state of Oregon, which yielded the following:

Governor Creates Commission on Autism Spectrum Disorder

(Salem) – Today Governor Ted Kulongoski signed Executive Order 09-07, creating the Oregon Commission on Autism Spectrum Disorder (ASD). The commission is charged with creating greater coordination and planning to better engage and provide services for individuals experiencing ASD and their families.

“Oregon, like other states, has seen a dramatic increase in the number of children diagnosed with Autism Spectrum Disorder,” Governor Kulongoski said. “This commission is an important first step in ensuring that individuals experiencing ASD and their families receive the services they need to face the challenges that come with the disorder.”

Across Oregon, services to people experiencing ASD have been fragmented and inconsistent, resulting in poor coordination with the various agencies and entities that provide services. The commission will make recommendations to increase coordination and collaboration through the identification of policies and strategies that will improve interagency agreements and address funding issues . . . “This commission will help make sure Oregon is incorporating all of the best information available on autism in treating and supporting those experiencing ASD,” Governor Kulongoski said. “The commission will also ensure we are getting the maximum benefit from local, state and federal resources.”

And then came my 15 Minutes! (Um, more like 15 seconds.) Unfortunately, I’m unable to embed the video right here on this site, so you’ll have to click on this link to view the two-minute news feature that aired in southern Oregon last night. They put me on twice! Not bad for an introvert, eh?

Knowledge for People

Every once in a while I think about the fact that, living in a developed country, we have so many autism resources available to us that are not available in developing countries. And not only resources, but the knowledge itself. The knowledge about autism. We know that it is not the mother’s fault. We know that the child is not possessed by demons. We know it is a neurological disorder and have the resources to obtain necessary therapy, treatment, and education. But others less fortunate do not.

And so I would like to highlight a very special organization, one that I am excited to have found out about, and one that I already feel so passionate about. Knowledge for People is a new non-profit whose focus is to provide  autism education to families and teachers in developing countries. This is their mission statement:

In many parts of the world, there is an extremely limited understanding of autism. Many communities and rural villages in developing countries lack adequate resources and are often unaware the disorder exists, even though it is occurring in children and adults around them. People see the symptoms and effects of autism, but often don’t know what is wrong or how to help.

Our goal is to provide these communities with a greater understanding of autism, its effects, and ways to manage its effects. Through outreach, education, and support, individuals with autism in developing countries around the world will be better understood, accepted, and integrated into their respective communities. Understanding of autism can positively affect families, schools, and the societies as a whole.

Knowledge for People’s first project is to do an outreach educational program in Nepal this summer. They will be working with parents and teachers to provide basic autism education and also to provide behavioral strategies, sensory ideas, etc. They will also be giving presentations, conducting individual case studies, and possibly doing a radio/TV broadcast. They are looking for volunteers who are knowledgeable about autism to go to Nepal with them, specifically speech and behavioral therapists. If you fall into this category and have the last two weeks of July open, please email: info @ knowledgeforpeople.org. They need your help!

Imagine having a child with autism but not knowing what autism is or how to help your child . . . Imagine not having services at school for your child . . . Imagine your child not being accepted into the community because people are unaware of autism . . . These are just a few reasons why Knowledge for People is so important. I hope you’ll join me in supporting them.

The Great Debate

I get a lot of page views as a result of some head-scratching search topics, as most bloggers do. Some of the searches have absolutely no relevance to what I write about, and some are quite funny. But here’s one that’s funny and relevant. In fact, I’d have to say that this one wins the prize for Funniest Search Topic of the Month, although I get the impression that it wasn’t necessarily supposed to be funny. Okay, here it is –

“autistic teens wear boxers” and “autistic teens wear briefs”

For what purpose would one need to know this? A survey? A parent checking on the general consensus before heading out to Target? After my laughter subsided, I was intrigued. I guess it could be a valid concern. It just looked funny in my list of searches.

And for the record, the autistic teen who resides here wears boxer briefs. Has for years and loves them. Now you know. Just in case the person who typed that search decided to check back.  And I’m not laughing at you, I’m laughing – oh, you know.

25 Things about Autism

I’ve seen this floating around Facebook lately and have decided to post mine here:

1. WHERE DO YOU CURRENTLY LIVE?
Oregon, USA

2. WHAT IS YOUR CHILD’S NAME, AGE AND DX?
Nigel, age 14, Autism

3. WAS YOUR CHILD PROPERLY DIAGNOSED?
Yes, twice. First time right when he turned 3, and again at age 5, for insurance purposes.

4. WHAT DID YOU THINK WHEN YOU FIRST LEARNED YOUR CHILD HAD AUTISM?
I was confused. Back in 97, when he was first diagnosed, all the information I had on autism was archaic. It said that autistic children sat in a corner and rocked themselves all day long. Nigel did not do that. But I quickly came to understand that autism manifests itself in many ways.

5. WHAT IS THE HARDEST THING ABOUT HAVING A CHILD WITH ASD?
The ignorance of the general public, and the bullying my son has endured. When he was younger, Nigel would have screaming meltdowns in grocery stores, public restrooms, etc. because he was in agony due to his sensory issues. People usually glared at us or made comments about “controlling” him. Also see #18 below. This is one reason why I blog about autism.

The hardest thing for my son has been the bullying. He has endured so much from mean, uncaring kids. And when he tries to defend himself, he ends up getting in trouble. I ended up homeschooling him because of the bullying and his anxiety that resulted from it.

6. WHAT IS THE BEST THING?
My son has an amazing mind and an engaging personality. Anyone who takes the time to get to know him – and to be patient with him – likes and appreciates him.

7. HAVE YOU TRIED THE DIET AND DID IT WORK?
Assuming this refers to GF/CF, yes, we tried it. Nigel does not seem to have the gut issues that others with autism have, so it didn’t work for him.

8. WHAT ABOUT OTHER BIOMED TREATMENTS- HBOT, CHELATION, ETC.?
The thought of chelation scares me, and I’m not familiar with HBOT.

9. WHAT METHOD OF ABA/Behavior Therapy DO YOU LIKE BEST?
Nigel had modified ABA-based therapy (and OT and speech) from the ages of 3 to 6, 4-5 days a week with two weekly home visits. We were fortunate that he had a positive response. I believe that is a key factor in how he is able to function today. After that, he continued with speech and some behavioral therapy over the years.

10. IF YOU COULD MAKE EVERY PARENT TRY ONE THING- WHAT WOULD IT BE?
Try not to be bitter. Sometimes, like when they smear blood from a bloody nose all over a room, or when you just have to pick up some milk at the grocery store and they’re screaming and bolting, or when they burn holes in the couch using a magnifying glass, or when the school has called you for the third time this week because of behavioral issues, or when you’re worried about their future, it’s really hard not to be bitter. We didn’t ask for this. No one does. But being bitter won’t help you; it just builds up and makes you feel worse. It took me a while to figure that out.

11. WHAT DO YOU THINK THE RATE OF AUTISM REALLY IS?
No idea – I try not to dwell on statistics too much.

12. HOW MANY KIDS WITH AUTISM LIVE ON YOUR BLOCK?
Just mine.

13. HAVE YOU EVER MET A RECOVERED CHILD?
No. It’s not a mental illness. It’s a different neurology, a different way of processing.

14. WHAT KIND OF EDUCATIONAL PROGRAM DOES YOUR CHILD GET?
Nigel is currently homeschooled for the past year, but we are in the process of having him go back to mainstreaming part-time.

15. DO YOU GET SERVICES/TREATMENTS THROUGH YOUR HEALTH INSURANCE?
some

16. DO YOU THINK THE DIVORCE RATE IS REALLY 80% FOR ASD FAMILIES?
Possibly. I’m divorced, but not because of the autism.

17. DO YOU HAVE A GOOD POOP STORY?
With his sensitive olfactory glands, Nigel never sought to do much with his poop except flush it. Prior to toilet training, he touched it once, and apparently that was enough. Blood, on the other hand, is a different story.

18. WHAT IS THE STUPIDEST THING ANYONE HAS EVER SAID ABOUT YOUR CHILD?
A co-worker of mine once said to me, “Having an autistic child must be easy.” I thought she was being sarcastic, maybe, but I asked, “Why do you say that?” She answered, “Because they’re so quiet.” I tried very hard to be calm as I said, “Just because some of them can’t talk does not mean they’re quiet!”

19. WHAT DO YOU SAY WHEN SOMEONE ASKS “WHAT IS AUTISM?”
I talk about the spectrum, that it’s neurological, that the jury’s still out on the causes, and I talk about how it affects Nigel.

20. WHO IS YOUR “AUTISM COMMUNITY HERO”?
I have said before that siblings are the unsung heroes of autism. I am so proud of my younger son Aidan and what he has experienced with having an autistic older brother. Please read about him here. And here’s another wonderful sibling. I’m sure there are many more. All of them have my love and admiration.

21. WHAT GROUP/ORGANIZATION DO YOU THINK HAS DONE THE MOST FOR THE COMMUNITY?
Not sure if this question refers to my own community or the autism community at large, but I am glad to be a Chapter Rep for the Autism Society of Oregon. They host many helpful seminars and awareness events, and I’m proud to be a part of it.

22. DID YOU VACCINATE YOUR CHILD AND DO YOU CONTINUE TO DO SO?
Yes, I did. Fourteen years ago most people didn’t question vaccination. But I continued to vaccinate him, because God forbid he contracts meningitis.

23. DOES YOUR FAMILY ACCEPT YOUR CHILD HAVING AUTISM?
Yes, they have been very supportive and loving. I am blessed.

24. WHAT LESSON HAVE YOU LEARNED AFTER ALL OF THIS?
I’ve learned that there’s still so much more to learn, and to do. Certain challenges can change with time and therapy, but other challenges take their place. And we’ll face them.

I’ve learned that even though sustained bitterness is detrimental, it’s okay to be sad sometimes. We’re human, after all. All of us. And we’re just doing the best that we can.

I’ve also learned that patience and a sense of humor and an occasional glass of wine will help immensely.

25. IF YOU COULD GO BACK IN TIME. WOULD YOU CHOOSE FOR YOUR CHILD TO BE NEURO-TYPICAL?
If I had answered this questionnaire years ago, when it was so hard just to get through the day, I might have said Yes. Now, I say No. I can’t imagine Nigel any other way. But I think, after all these years, that even if he had not learned to filter his sensory issues and started talking, at this point I still wouldn’t want to change him. People with neurological differences are amazing regardless of their functioning level.

7 Positive Things about Autism

Let’s be honest: This is hard, this autism business. It’s hard on us. It’s hard on our kids. Those of us who blog have an outlet, a source for venting, and a type of therapy. But we don’t just talk about the hard stuff – trying to get through the day while worrying about the future. We’ve also been known to mention how rewarding it is to have a child with autism, how fulfilling. There is no doubt that our autistic children have enriched our lives.

And so, with that in mind, I give you my 7 Positive Things about Autism:

  1. 1) As special needs parents, we are the most attentive parents around. And that’s a very positive thing. I do believe that if my son were not autistic, I would still be an attentive parent. Of course I would. But the fact is that because he is autistic, I go above and beyond the norm of parenting. It’s harder, and it takes a lot out of us, which would seem like a negative thing. But I’m proud of what we do, the example that we set. I think it’s very positive.
  2. 2) We learn not to take anything for granted. Whether it’s talking, showing empathy, or being able to eat at a restaurant without screaming or writhing on the floor in sensory overload, we notice and appreciate every small step. Because it’s not so small for our kids.
  3. 3) Our ASD kids are unique. They view the world differently, and if we can just be privy to a small part of that, we are indeed blessed.
  4. 4) Nigel’s need for routine helps to keep me more organized. If I already know that we have pizza on Mondays and Fridays, then I don’t have to think about it. Dinner’s already planned two days out of the week. One less thing to deal with.
  5. 5) Autism teaches siblings, relatives, and anyone in contact with our kids – even ourselves! – to be more understanding, patient, and more accepting of people who are different. And that’s a very good way to be in this world.
  6. 6) As a writer, I get some great material because of autism! Whether funny or emotional, I always have entertaining or intriguing topics to discuss.
  7. 7) There is so much to enjoy about our children’s personalities, whether they are verbal or not. My son has a very direct nature, makes interesting echolalic associations and non-verbal mannerisms (even though he is verbal), and is very opinionated. He’s also got some great ideas forming in that ND brain of his. Some ideas are serious, some funny. And for all the difficulties he experiences (and I with him), I can’t imagine him any other way. Believe me, I’ve tried – it’s a natural thing for parents to do, especially on the hard days. But I think what gets us through are all the little quirky wonderful things that further endear us to the children we love.

Please add to the list – what, in your experience, is positive about autism?

Selfism

I suppose many typically-developing teenagers question why they need to learn certain things in school, or why they need to take a certain class. And you can usually reason with them along the lines of “You need to graduate from high school so that you can go to college. Or if you don’t go to college, you still need to graduate from high school so you can at least get an entry-level job somewhere. And in order to graduate from high school, you need to take some classes that you don’t like.” And they won’t like this reasoning, but they will eventually see the logic.

The autistic teen? Not so much. “You don’t think like I do.” This is what Nigel tells me after I have tried the above-mentioned reasoning tactic. He really does not see the merit in graduating from high school. “I want to live how I want to live. Why can’t we live like our cavemen ancestors? That was when survival was more needed than mathematics.” And he is serious.

This is what I deal with when I try to teach him algebra and essay writing. And I point out to him that at least now he can learn these mandatory things at home where it’s quiet and he is not distracted and harassed by other students. I also gently mention that I’ve made some major adjustments to be able to do this for him. But that’s a concept he can’t grasp. Even though once in a while he’ll take out the trash without complaining and then (!) he actually puts a new bag in the trashcan without being reminded (!) or he scoops some ice cream in a bowl for himself and then – on his own – scoops some in a bowl for me (!), even though he does these things once in a great while, he is still pervasively influenced by the aut, the self. Selfism. It’s not that he only thinks about himself or only cares about himself. It’s not egocentric or narcissistic. It’s that he cannot understand someone else’s viewpoint. He can’t possibly realize that, as a single parent, I go through a lot to be able to homeschool him. He can’t understand why education is necessary, beyond what he already knows. He is governed by the self. “You don’t think like I do” also means “I’m only able to think how I think.”

Mind you, this is just a mom still trying to figure it out. I think I know enough, and then months later I have another epiphany and I realize that I have so much more to learn. I know now that I will spend the rest of my days trying to understand my son’s autism. Trying to think like he does. Many parents say that having an autistic child will make you see the world differently. My son is fourteen and every day I am still realizing just how true – how profoundly true – that is.