Category Archives: Misc. Autism topics

Last-minute gift idea

I just received the following message from the Elija School for Autism and thought I’d pass it along in case anyone is looking for a last-minute, autism-related, philanthopic gift idea. If so, please support them!

“The ELIJA School for Autism is an incredible institution that focuses on treating some of the gravest cases of Autism in children.  Due to the recent state budget cuts, the ELIJA School is searching for new ways to receive financial support for their programs and this holiday season they have created a unique holiday card that makes for an influential and uplifting gift.  With the Seeds of Hope Holiday Gift Card, supporters can make a donation to the ELIJA School in the names of their friends or colleagues, who will then receive a beautiful card ornamented by the ELIJA tree made out of removable seed paper.  This is a great last-minute gift that will truly make a difference as people join together to plant the seeds of hope. [It] benefits not only the ELIJA School itself, but also the inspirational gift-giving that it is promoting this season. 

Seeds of Hope Holiday Gift Card Link: 

https://elijaorg.ipower.com/contribute/donate-now/holiday-gift.php?

Thank you for your time and may you have a wonderful holiday season!”

Experience Matters

I was recently contacted by two different parties conducting surveys regarding our experiences as the parents of children with autism, and I am happy to post the information about them. Why? Not just because those conducting the surveys would benefit from our experience, but because, in the long run, other parents would benefit as well. Our experience matters to them. Letting our voices be heard matters. If you can, please join me in participating in the following surveys:

Mischelle Miller-Raftery, a doctoral student in psychology at California Southern University, is conducting a study on potential prenatal environmental triggers of autism.  Ms. Raftery is looking to survey at least 50 mothers raising children who have been diagnosed with autistic spectrum disorder (Asperger’s Syndrome, autism, and pervasive developmental disorder-not otherwise specified); and 20 mothers whose children have not been diagnosed. This survey asks general questions about the mother’s environment and lifestyle choices during pregnancy. The participant will be asked to fill in each question for the time period during their pregnancy with the child who was diagnosed with autism. The premise of this study is to look for trends between environmental exposures and autism. Specifically, this study explores multiple exposure combinations which might have occurred during your pregnancy. The goal of this study is to explore the possible environmental influences on autism.

To qualify for the study, the participant must meet the following criteria:
• Their child must have been diagnosed with autism spectrum disorder including Asperger’s Syndrome, autism, and pervasive developmental disorder- not otherwise specified.
• Their baby must have been considered full-term (born after 37 weeks).
• Their child must have no other developmental diagnosis.
• Or, for the control group – Have a child over the age of three with no known diagnosis.

Participation in this study should take about 25 minutes to fill out the questionnaire. The link to the survey is: https://www.surveymonkey.com/s/3YBPGBT, which is open until January 15.

The other survey opportunity is being conducted by researchers at Columbia University’s Institute for Social and Economic Research and Policy. They are currently collecting life stories from parents about our experiences in recognizing our child’s autism, seeking professional help and navigating the available service systems. The goal of this project is to gain a better understanding of the road to diagnosis. We parents have different experiences and observations of our child’s development, and we have different personal resources with which we access care and services. We also differ in the type and extent of our support networks and social relations. And finally, we make different decisions in our quest for obtaining the right diagnosis and care for our child.  The researchers would like to give parents the chance to tell our stories. Participation in the survey may help them understand the heterogeneity of autism as well as how children develop over time.

The life stories of parents of children who have autism are being collected through an online semi-structured survey at http://www.understandingautism.columbia.edu.

Thank you for your time and for sharing your experiences.

Good Stuff

Time for a few announcements! I am periodically contacted by various companies or organizations for product reviews or links to sites or requests to post videos, and I am happy to accommodate whenever I can. I try to post them on a quarterly basis, and since I haven’t since spring, I’ve got a few I’d like to mention.

Unfortunately I’m not able to do every product review that I’m contacted about, but I really wanted to do this one because I love pears, and I feel strongly about the importance of organic foods in our diet. GoGo Juice is ripe, peeled, organic pear juice, pure and simple. I received my sample with instructions to dilute it with 40% water, which I did. Since Nigel does not drink much juice, Aidan and I tasted it. I found it to be light and lovely, but Aidan felt it was a little too light. He preferred a 25-30% dilution. At any rate, it’s a really healthy, tasty juice that I feel good about having in our home. And not only that, GoGo Juice supports autism awareness! They will donate $1 to the Autism Society of America for every new Facebook fan until the end of September! Click here to go to their Facebook page.

Up next, I received a notice about a program by CVS Caremark called All Kids Can, a five-year, $25 million commitment aimed at making life easier for children with disabilities. They have launched a Facebook page that serves as a community for families, teachers, and experts alike to share stories, pictures, or articles and have conversations related to helping children of all abilities to learn, play, and succeed in life. They’ll also be posting articles from experts, news, and videos on the latest innovations benefiting kids of all shapes, sizes and abilities. See the website for more information about the program: http://www.cvscaremarkallkidscan.com/

Lastly, I would like to draw your attention to the Teen Autism Social Groups page. I started it two years ago, and since that time there have been several postings, including one in Australia! Take a look and see if there are any near you. If not, many of them can be contacted by email, and you can connect that way. As we bloggers know, there is great support to be had across the Internet ether. Feel free to let me know if you’d like me to post a listing there for you as well!

Noteworthy

I was recently contacted by StoryCorps, which is a really cool organization, regarding this sweet, touching video featuring the voices of a twelve-year-old boy with Asperger’s interviewing his mother. The animation is simply enchanting. It’s been making the rounds on the autism-related sites, so some of you might have already seen it. It’s really worth watching if you haven’t, and if you have, treat yourself again:

Q&A from StoryCorps on Vimeo.

In other news, an article was recently posted on the “30 Best Books for Understanding Autism” that is worth checking out. Several on the list were new to me, so I thought I would pass it along. Cheers!

A Shirt of His Own

Last April I had a bunch of Autism Awareness Month announcements that I posted periodically throughout the month. I had been contacted by several agencies and individuals requesting that I share their information with my readers, and I was glad to oblige. This year, for whatever reason, I only received a couple of requests. So without further ado, and before the month is over, I’d like to highlight a company that I’m sure you’re all familiar with.

I’ve written about CafePress before, when I first discovered how many autism T-shirts they have available. There truly is something for everyone! And now when you buy from CafePress, a portion of proceeds on every sale from the Autism Awareness page benefits Autism Speaks. Plus, orders through 4/30/10 of $40 or more receive free shipping.

When I last wrote about the autism T-shirts at CafePress, I mentioned the “Autistic and Proud” shirt that I saw there, hoping that someday Nigel would want to wear it, because I want him to be proud of who he is. At the time, he was pretty down on the subject of autism – “the A-word,” he called it – and certainly would not have donned a shirt advertising it. But in recent months he has been feeling better about his autism, his “difference,” he calls it, and so last week I showed him the shirts and asked him if there were any he liked. He immediately chose this one:

It says “Wish you could see the world through my eyes.” And I thought, Yes. That’s the one. It’s perfect for him.

Aware

Are you ready for the irony of Autism Awareness Month ironies?

As many of you know, I am the southern Oregon chapter rep for the Autism Society of Oregon, and I facilitate the monthly support group meetings. Since, as all of you know, this is Autism Awareness Month, I planned to show an informative DVD of a presentation given by an adult with Asperger’s, loan out many of the books I’ve reviewed here, share some Easter candy, and give out various autism-related “goodies” – magnets, bumper stickers, symptom cards, etc. I got there a few minutes early, set up the TV/DVD player, put out all the books and paraphernalia, and thought about what I wanted to say during the meeting.

But no one came.

Now I know that many of the support group members also read this blog, and I want to assure you that I am not writing this to complain or to indicate any sort of disapproval. It’s totally okay! Some of you e-mailed to let me know that you would be out of town or otherwise engaged or might not have childcare. And while kids are always welcome to attend the meetings, I completely understand if you, the parent, would rather not have your child there, for whatever reason. Believe me, as a long-time single parent, I understand! I know how it is when you just want to get out of the house by yourself, but can’t. And I definitely know Busy. Busy and I have been hanging out too much together lately, I’m afraid. I know how it is when you just can’t add one more thing. When you’re so busy that it wouldn’t be a break to attend the meeting, and a break is the thing you need most.

And I know how it is to need a break from autism. Not necessarily from your child who has it (although that is often the case!), but from the barrage of all things autism – books, DVDs, news stories, events, meetings. I’ll be the first to raise my hand and say that I’ve often felt this way! Coming up on thirteen years post diagnosis, I sometimes feel over-aware. Saturated. Not to mention tired. All of us feel this way more often than not; it comes with the territory. And so, we need a break from autism. And it’s understandable to feel a bit “over” the idea of Autism Awareness Month.

Tonight, I waited in the meeting room for twenty minutes, metaphorically shrugged my shoulders, packed up all of the autism stuff, and ate some Easter candy as I drove home. And I thought about the fact that the people who most need a break from autism don’t get one. Every day our kids must contend with painful sensory issues, communication difficulties, social misunderstandings, vulnerability, and many other issues described so well by my friend, Jess, who wrote this post that I highly recommend you read. And I highly recommend that you pass it along to your friends and relatives. Because so often we talk about what autism is, but we don’t always talk in specific terms about how it really is for our children. And once people can grasp that, wrap their minds around the reality of it, I think it will make a tremendous difference in how they view our kids and this thing called autism. That’s what I think Autism Awareness Month is for. I’m aware. You’re aware. But there’s a world of people out there who aren’t.

Driving into the Sun

This morning, like every other weekday morning, Nigel got on his bike to go to school, Aidan walked to the bus stop to be picked up to go to his school, and I got in my car to go to work. A few miles down the road, I pulled up to the intersection and into the left turn pocket that leads out to the freeway. I could barely see the signal because the sun was directly behind it, blinding me. I tilted my head so that most of my vision was shaded by the car’s visor, and the little red arrow was faintly visible in the thin space between the visor and my rear view mirror. A moment later I could barely make out the little arrow changing from red to green, and I blindly drove forward. I felt like I was driving into the sun.

And it struck me, as I got on the freeway, that for the past twelve years since my son’s diagnosis, that’s exactly how it’s been. That’s how it is for all of us. We are driving into the sun. There are no rules about raising a child with autism! No tried and true methods. What works for one child doesn’t work for another. Because I pursued intensive (but non-aversive) ABA treatments for my son so that we could increase his chances of learning to talk, and then medication to help regulate his behavior, does not mean that I do not accept him as he is. Because someone else does not pursue various therapies does not mean that they do not want to help their child. Because I say that my son “is autistic” does not by any means indicate that I don’t think that there is “so much more to him” than that. Because other parents prefer to say that their children “have autism” does not by any means indicate that they’re in denial. Both ways are valid – and appropriate. There are no rules with autism. We are all living with it the best way we can.

At work a while later, I received an e-mail with a link to this New York Times article. Here’s the crux of it: “Though it [Asperger’s] became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012.” How does that grab you? I knew that the DSM was up for revision, but I never thought that this was the way it would go. And you know what that tells me? It tells me that we parents aren’t the only ones driving into the sun. If the “experts” don’t know how to effectively define all of autism’s manifestations, where does that leave us?

It leaves us right where we’ve always been, doing what we’re doing, forging ahead even when we’re not sure if we can. Damning the torpedoes and hoping for the best. Trying everything – or not. Because the bottom line is that we have to do what feels right to us, not what neighbors or relatives think we should do. Certainly not what “experts” tell us to do. Instead, we network, we support each other and our different choices. We respect one another as parents of autistic children, and as parents of children with autism. Because whether some of us go to the left and some of us go to the right, we’re all just figuring it out as we go, trying to live our best lives. And if we all arrive at the same destination, does it matter how we get there?

It’s like with the boys and me this morning, every morning. We all go our separate ways, but at the end of the day, we are home, happy, together. We may do a little driving into the sun while we’re out there, but the day still passes, and we have the harbor of one another to see us through.

Time for a Change

Remember when the autism ribbon magnets came out? I do. I don’t recall how many years ago that was, but I got some right away, gave a few to relatives, kept a couple. We didn’t really think about the puzzle message back then, the “I am not a puzzle” outlook. And I totally get that; I do. But to me, it’s not the person that’s puzzling. I’m sure most parents feel that way. And definitely some kids.

Anyway, even though I always thought that the design was too busy and actually detracted from the message, I still sported one on the back of my car for several years, along with an “I love a person with autism” bumper sticker. As time went on, the bumper sticker peeled and faded considerably, but the magnet held strong. Years of carwashes, storms, uncovered parking, and road trips (we take a lot of those) did not affect it. That thing was baked on.

And then, two months ago, I went through the carwash, the same carwash I’ve been going through for years, and the magnet came off. I went to a store after the carwash, and when I came back to the car in the parking lot, I noticed that the magnet was gone. Just a little black piece of it was left behind, still baked on.  I stood there for a moment, dejected. I always like to look for those whenever I’m driving and get a feeling of pride and a little excitement when I see one. And now mine is gone. Sure, I can easily get another one, but it won’t be my magnet, the one that has gone with us everywhere for the past seven years or something like that. I didn’t want to replace it with another one.

So I decided it was time for something new. Finally motivated, I got going on something that I’ve been thinking about doing for a while. I did some looking, tried out a few designs, and TA-DAH! I proudly present to you the all-new, puzzle-free Teen Autism bumper sticker!

And because I thought there might be other parents out there looking for an awareness alternative for the family car, I made enough to share. Really! If you’d like a sticker to let others know that you’ve got an older child with ASD, just send an e-mail to Tanya@teenautism.com with your name and address. Or if you know of any teachers, therapists, or sped coordinators in your area who would be interested, let me know and I’ll be happy to send one out for them.

Seeing my car without the iconic ribbon magnet took some getting used to. But I must admit that I like my cool new sticker even better!

 

Bert

I don’t really remember having a hero when I was growing up. Some kids idolize actors, musicians, and athletes. Some kids cite firefighters or other rescue personnel as heroes. Sometimes teachers, even parents. Religious and political figures. And then there are those who have fictional characters as their heroes – movie, book, or cartoon characters and superheroes (I admit, I did have a bizarre crush on Aquaman for a while).

As adults, we often develop different heroes (fortunately, for some of us). Our friends and spouses, for example. Our siblings. For many, parents still head the list. Those of us who are special needs parents often list the teachers and therapists who work with our children as our heroes, not to mention our children themselves, with all that they go through. And then we – parents – have each other. We inspire, listen, support, encourage, and make suggestions. We reach out, share, learn, and hope. We identify with each other.  We are each others’ heroes.

And now I have a new hero to add to the list – the ever-growing list of fellow autism parents I have become fortunate enough to know, either online or in person, or both. I want everyone else to know about him too, because I think he’s phenomenal. I’ll call him Bert. Bert attends the support group that I facilitate. He’s 84 years old and has a son with Asperger’s. Eighty-four! His son is 58, and Bert drives him to work and cares for him. (He recently applied with a local organization that handles adult DD services to get some support systems in place.) Bert reads anything about autism that he can get his hands on, takes notes, and comes to the meetings to tell all of us about what he read. He tells jokes, encourages us to lean on each other (like AA people, he says), and patiently listens to those of us with much younger kids. He reminds us that even though our kids are all different and at different ages, we share many similar experiences. He wears a cute straw hat and plaid shirts and I just want to give him a big hug. All of us inspire each other, but that man, that gentle, devoted, amazing man, is my new hero (sorry, Aquaman).

Bert, I want to be like you when I grow up.

Things Are Not Always As They Seem

As an autism parent nearly twelve years post diagnosis, I (and, I’m sure, many other parents) have developed what is often referred to as “A-dar,” short for autism radar. It’s the awareness of a possible autism diagnosis through observing the behavior and facial cues of children and adults with whom we happen to come in contact. It’s not something I ever make an effort to do – it just happens. I’ll be in a public place, or a gathering of some sort, and I happen to notice something different, but all too familiar. My spine sort of tingles, and I know. Or I think I know.

A week before going to Nepal, I spent a couple of days visiting with my extended family that lives in Los Angeles County, where I grew up. My brother and sister-in-law hosted a barbeque on the Fourth of July, and, in addition to everyone’s company, I enjoyed lounging around their pool and watching the fireworks from it. We could see about a dozen different fireworks shows in the surrounding communities, all going off intermittently. It was really cool to watch, and I was happy to be there.

The next day, my brother and I got together with our youngest sister and drove out to Hacienda Heights, a city in LA County where we had spent most of our childhood. We drove by three of the homes we’d lived in, stopping to take photos of two of them. They’d both been redecorated, of course, and we were relieved that they were not in disrepair. One had had a tree in the front yard that my brother and I used to climb regularly, and it had been taken out, we noted with disappointment.  One had been a brand new home when we moved into it in 1976, and so the baby trees that our parents had planted had grown up all these years later, towering over the house.  The fact that we had now grown up, too, was not lost on us.

Then we went to the local ice cream store where I had worked during high school. It was still there! It felt weird to be buying cones from the other side of the counter, noting all the changes in the place since I’d been gone for twenty years. The chain grocery store that had anchored the shopping center was empty, out of business. But the ice cream store was still there, a little oasis on a hot day. Then we drove out to the mall where we used to buy all our school clothes while growing up, and we stopped for lunch at a Mexican restaurant that we’d loved as kids. This time, though, we had margaritas.

After lunch, we drove out to the cemetery where one of our grandfathers is buried. We couldn’t remember where it was, but we had a hunch and were able to find it. The three of us sat under a tree on a bench next to his grave and talked about our memories of him. My brother noticed a cigarette butt on the grave marker and got up to flick it away. Then we laughed as we realized that Grandpa probably liked having it there, since he was a smoker who always tried to hide it from everyone.  

When it was time to drive back to my brother’s house, he stopped for gas and got out to pump it. Sitting in the passenger seat, I began to hear some type of vocal stimming coming from the SUV filling up next to us. “Kava, kava, kava, kava,” it sounded like. A few seconds went by, then “Kava, kava, kava,” again. It was a masculine voice, maybe an older teen. I wanted to see him, wanted to see if my interpretation of what I was hearing was correct. But the windows of the SUV were dark, and I could not see in. After another minute, the SUV pulled away, and I silently wished them well.  

Seconds later, I heard it again. “Kava, kava, kava.” Obviously, it had not been from an occupant of the SUV. I turned around and looked. “Kava, kava, kava.” It was a young man selling flowers. What? I thought. What is he saying? I strained to decipher it and decided that he must be saying “Flowah, flowah, flowah.” But he was saying it so quickly and run-together, with a non-native-English-speaker accent, that I thought I had been hearing vocal stimming. I had been convinced that that’s what it was. I laughed inwardly at myself, my certainty, and my mistake. Sometimes things are not always as they appear to be. Houses are repainted, trees grow bigger or get removed, and sometimes a guy is just selling flowers.

My brother and I in front of one of our childhood homes