Hello ACU peeps,

Well I returned from yet another Disneyland trip relatively unscathed, and even had fun! So here are my autism friendly tips for that big trip to Disneyland:

1. Have your kid with autism wear the sanctioned autism t-shirt (I have Autism, be nice to my mom, or some other form of advertisement) at all times advertising the fact that although he/she is very cute, there WILL be some misbehavior. I have a Disneyland set of t-shirts that are bright yellow so that I can see him at all times. I also write my cell phone number on the back in black marker.
2. On the airplane, seat the person most affected by autism by the window, behind a family member, and next to a family member. That way, when the freak out occurs, it’s only your family that gets the brunt of it.
3. Prepare other tactics for diversion when all electronics must be turned off, i.e. magnadoodle, books, candy, etc.
4. Medicate the child and one of the parents.
5. A Sudafed just before flight will help with the ear popping.
6. Plan for the food. Pack snacks to tide the kid with autism over. Lines for food are long and waiting is hard. Find a place before you go into the park in which your child will eat something.
7. Stop by the “city hall” to get your disability pass which allows you to enter the rides through the exit and skip the long waiting lines. NOTE: The autism friendly t-shirts also help with the stink eye when you go to the front of the line.
8. When your kid acts out, start signing to him/her, or speaking in another language…it lets other people know that something is not quite right, give you a tiny bit of sympathy factor.

Now, go, have fun, and keep your arms and legs inside!!

Cheryl C.Smith

As a parent of a child with autism, you become all too aware of “The Stare”. Because many of our kids lack the visual cue that they have a disability (a wheel chair, walker, distinguishable physical characteristic) the looks and stares can feel like a judgement or criticism. The stares tend to come with the verbal outbursts,flapping, slapping clapping, hooting, screaming (you get the picture). Many of these outward expressions of autism can be excused when the child is younger, but the tables are turned when your son is 6′3″, 180 lbs, has facial hair and a deep base voice.

We were the recipients of THE STARE Saturday night while we were being seated for dinner at Chili’s. As we walked to our table, Ty (see the above description) sneezed directly over a mans plate. *STARE* We hurried to get seated so we could order the gentleman another dinner (yes, we replace many dinners that we take food from – and drinks that we put fingers in). Before we could get Ty into the booth, the gentleman was up out of his seat heading for the manager. My husband went after him to explain that we were going to replace his dinner and to offer our apologizes, wanting to let him know that Ty has autism, and has not learned the valuable skill of covering his mouth when he sneezes or coughs.

I watched from several seats away as these two men were engaged in their conversation, trying to catch a word of their exchange, hoping that my husband would stay calm. I assumed we would be asked to leave after replacing the meal.

The man turned away from my husband and walked toward our table…I was ready for the lecture…”you shouldn’t take your son out in public, you should teach him, you should…” A conversation we have all heard too many times. He approached the table and introduced himself as a Special Education Teacher from Ogden and insisted on buying us dessert. He went on to explain his love for his job and the students he worked with, and how happy he was to see us out as a family.

This man is my hero – and he can stare at us anytime he wants to.

Laura Anderson – Ty’s Mom

Hey everyone,

This video was made through a grant that the Utah Parent Center received. We collaborated with them to write the scripts and come up with the ideas and people. We think it’s awesome…a bit cheesy perhaps, but awesome. It is all dedicated to building your own autism community, don’t wait for someone to help you or for funding, etc. start building your own supports where you can. Not that we will ever stop advocating for supports for our families, but it’s a start.

Pass it on.

Thanks, and hang in there!!

http://www.utahparentcenter.org/training/videos/families-living-with-autism/

New resource for autism peeps…. YAY!

The Autism Resource Partnership, a “one stop shop” for parents and professionals, is being created through a $450,000 grant from The Regence Foundation.

Spread over three years, it will enable the U. to provide information and training for families and professionals and develop a website with information on evidence-based treatments, local resources, including support groups and therapy options, and ways to get involved in local research projects, a state-wide network. The media asked me if this wasn’t what the ACU already does? I told them that there is no competition in autism, just collaboration and commitment. I am also sitting on this committee and I’m sure the ACU will link to this Partnership website.

“Anybody who is close to autism knows there are a lot more questions than there are answers,” he said, noting that his niece’s son has the disorder. “We want to start answering questions,” including what causes it and how best to treat it. (wow, that would be GREAT!!)
Considering 1 in 77 8-year-olds in Utah has autism, “it just screams out for an area of focus,” said Robert Hatch, president of Regence BlueCross BlueShield of Utah.

Another question is whether insurance companies should cover autism behavior therapy. Attempts to mandate coverage in Utah were defeated in 2009 in part due to complaints by insurance companies. Hatch said his company covers medical treatments, including medication, psychiatric care and occupational and physical therapy. (Parents will be going after insurance reform again this year!)

Cheryl Smith, president of the Autism Council of Utah, said she is “thrilled” with any money that is available to help families who have children with autism. She expects to see more referrals to her group because of the efforts. “I’m excited to see health care step up and take a part in trying to find help for these families.” (That’s me…)
Heather May, SL Tribune

I had the great opportunity to attend a demonstration of such a product with the Layton City Police Department. The product called EmSeeQ, by EmFinders (www.emfinders.com) uses the E 9-1-1 network and advanced cellular technology to rapidly locate your missing loved one and direct first responders with one phone call to the EmFinders call center. Within minutes, EmFinders activates the device, contacts the 9-1-1 system and emergency responders are sent to the location. Having the pleasure of watching this device in action, it is really that simple and that effective, and most importantly, provides peace of mind. In addition to the benefit, the fact is this product is more than affordable. The device itself ranges from $169 to $199 for the two different models, whereas the service is at a very reasonable $25 per month or $250 per year. However, cost is nothing next to the peace of mind, the comfort we have that our loved ones can be located by simply making a phone call. How can you put a price on that?
As a consumer, I find this to be a tremendous technology. I can see how this can save precious time for our first responders. The Layton City Police Department spent over 425 hours looking for missing persons from June 1, 2010 to July 1, 2011. That’s 425 hours of fear, despair and risk to our loved ones. As a dad, I see this is a way to locate my child much faster and bring him home to me. The fear of wandering shrinks as would my anxiety that the minutes may turn into hours, or days. As a father, a mother or any caregiver, who can put a price on a safe return home?

James S. Vaughan
Member – Autism Council of Utah
Families of Autism and Asperger’s Standing Together (F.A.A.S.T.)

http://faastutah.weebly.com

School is underway again. For many of us it means new routines, new teachers, maybe even a new school… For others, it’s another reminder how close we are to transitioning to adult services, if not in the midst of that transition or still trying to sort out what’s out there for adults on the spectrum. There certainly is no rest for the weary, because just because this year is underway, there’s always next year to think about.

There are so many of us who have spent more hours trying to figure out where to send our child with ASD to elementary school than what many of us spent trying to sort out where to go to college! Not to mention the inordinate amounts of time figuring out doctors and therapy and social groups and support.

The ACU is “Your Autism Connection” here in Utah! The Events and Resources pages are alive and ever changing, with new resources being added all of the time. There are so many listings for education, recreation, and plenty of service providers, too. And we’ve linked it up with facebook, so you can tell how many people have recommended it. If you like a resource and aren’t into social media, feel free to use our comment section to tell us and we’ll add your recommendations, too.

And speaking of recommendations, have you seen the video and materials on “Autism: Essentials for Educators”? I love them! They are produced by the Utah Personnel Development Center, and can be found at http://www.updc.org/autism-essentials/. We saw parts of the video at the last ACU annual meeting, and I think it is fabulous! Even for me, as a parent, because it gives a great summary of autism (when people ask me about it, sometimes I would be stumped for a reply, and this has given me some things to say!) as well as handy tips and tricks for working with kiddos that can be used immediately. I personally have recommended this site to friends who are teachers or otherwise work with children, and they also think it is great!

Here’s to a great school year!

-Liz Saling
Membership & Information Chair

Dr. Gerhardt was fantastic! We had a great turn out and everyone loved the good “take home” information on teens and adults with autism. I do have some extra handouts if anyone is interested, and we were really excited that we were able to film his presentation with grant money. The presentation will be available on the ACU web site for free use in training or just viewing. My goal now is to get all this great adult autism stuff going on in Utah, even if it is a pretty, great state already. Laura and I have been finding ourselves training group homes and facilities on adults with autism as they are starting to see folks with autism and don’t know what to do with them…sad, and scary, BUT who better to change the world than all of the autism parents!!

Wow, school is just about here…Praise all that’s good and holy! We are ALL ready.

Cheryl C. Smith

Our very own Laura Anderson, President-Elect of the ACU, won the Angels for Autism award at the Autism Speaks kick off! We are so proud of her. Laura has done much to advocate for individuals with autism and we are very lucky to have her serve on our leadership team. As many of you are aware, she is also the co-queen of the Big MAKS (mothers of autistic kids) and serves on many more committees for autism.

We are WAY excited that Peter Gerhardt is coming August 6th, register at the Utah Parent Center. He is very knowledgable about adults and teens with autism and fun to listen to as well. The SaharaCares carnival will be September 17th at Wheeler Farm, and the Autism Speaks walk is October 8th at Rio Tinto. The Big MAKs have a team if you want to sign up and don’t have a team.

Autism is on the rise and so are the autism advocates!! Hang in there, summer is not forever.

Cheryl C.Smith

Autism Specialty License Plates are available through the Department of Motor Vehicles.
Show your support by putting an autism awareness plate on your car!!
Honk and wave if you see an autism plate going by.

Spread the word to you co-workers, friends and family.