Janice Kern, TACA Conference Coordinator
TACA hosts events every week somewhere in the country. There are coffee talks, family picnics, TACA Meetings, Autism Learning Seminars, Family Hikes, TACA Birthday Parties and the list goes on. It’s a fact that TACA has some of the most creative volunteers you’ll ever meet. If they can dream it, they will plan it and invite families affected by autism to join them. Added to this list of events is the Real Help Now Autism Conference.
TACA will host three conferences in 2014. I was very fortunate to attend the Real Help Now East Coast Conference in Philadelphia on April 26th. I was among many TACA parents getting help and giving help. If you haven’t been to a TACA conference, you are missing out and I hope you can attend in the future. If you’ve been there, you know what I’m saying. TACA on your laptop is a great resource but up close and in person, it’s a life changer.
Join parents and professionals like yourself at the next TACA conference. There are two more locations this year. Meet us in Costa Mesa, California or St. Paul, Minnesota. Both locations are where TACA holds meetings and events with TACA chapters. The volunteers who coordinate the chapter efforts will help with conference efforts and would love to meet you in person.
Right now, there are early bird registration rates for both conferences. Take advantage of these super low conference registration rates of $30. This price increases soon. Included in the registration is coffee all day long (wake up!!), lunch, TACA support with TACA mentors, your choice of two conference tracks to follow, and the best speakers with the latest and greatest information. Something that attendees especially appreciate that is unique to Real Help Now is the Conference Workbook. This workbook (guaranteed to each pre-registered attendee) contains every presentation for you to follow along as each presenter shares information with you. You can take notes and take it home as a resource and reference.
There are two more TACA Conferences coming up in 2014. Hopefully you can attend one of them. What if you can’t? Unforunately, TACA can’t host a conference in every city or every state. There is plenty of information to go around so don’t be afraid to send one of your friends the conference information even if you can’t attend yourself. There will still be support and information for you with the TACA Mentor Program, TACA Livechat, TACA USA Yahoo Group, Social Media with TACA’s FaceBook page and the content filled website at tacanow.org.
Click here to print out or post our conference flyers. Share them with providers in your area, post them on your social media sites and help TACA reach more families so that their children can be helped to be as healthy as possible.
Ready to register?
Register for Real Help Now West Coast on October 3rd and 4th in Costa Mesa, California: http://www.realhelpnowconference.org/west/register/
Register for Real Help Now Midwest on November 8th in St. Paul, Minnesota:
Janice Kern, TACA Mom and Dang Chic
There was a special event planned for a particular evening. As with most special events, I wanted to pick an outfit for the occasion. Fortunately, a package had arrived several days before so I didn’t have to think too hard about what to wear.
The occasion was our son, Charlie’s, junior Black Belt TaeKwonDo test. He started TaeKwonDo at the age of 8. He required special one on one instruction from very devoted teachers due to the many challenges brought about by autism. After the first 15 minute session, we were hopeful that he would be invited back. We knew the instructor might determine that this was a challenge too great to take on. We were thrilled with the invitation to bring him back for another class. It was a huge effort each class. Charlie earned his white belt (first belt level) along with his special uniform and we were happy. We thought maybe that would be the end of Charlie’s TaeKwonDo career. We were very thankful when the instructor let us know to bring Charlie back for another session. In order to earn his orange belt, he needed to take a test. It was a huge challenge. He cried through most of the test. He needed to wear a snowboot in order to break his first board. But he got through the test and we were proud of him. He wasn’t proud at all. He couldn’t get over the anxiety of the experience. But we continued to another session of private 1:1 taekwondo classes. Several more belts were earned similarily to the orange belt. There was a lot of anxiety and tears. However, in the last 2 years, Charlie has made a leap in progress and the anxiety and tears have been less frequent. A year ago, it was determined that Charlie would be given the opportunity to work toward testing for his junior black belt. He was able to join the regular TaeKwonDo classes with the large group of kids leading up to testing date.
Finally, it was junior black belt test day. Charlie was very well prepared. For the first time, we had marked the test date on the calendar so that Charlie knew the test was coming. In years past, this caused greater anxiety so we avoided making notes on the calendar. Charlie has 3 brothers who know very well the hard work required to get to the point of testing for junior black belt so were all excited to watch the test.
Test day arrived and I needed to be ready to be supportive of his huge effort. I also wanted to be ready to celebrate, personally, what we have given of ourselves in order for Charlie to get to this day. I wanted to dress the part.
I opened my package from Dang Chics and knew right away this shirt was perfect for the occasion. The tag on the shirt was such a great way to describe a mother whose child is affected by autism. Hot Mom, Gives A Lot, Schedule Crusher were three of my favorites. This black belt test is something Charlie has earned and worked so hard to achieve. But what I have done for him to have made this day happen makes me feel like one tough dang chic. We have met and come to know many people who have helped Charlie along the way but we’ve also met plenty who didn’t share in our hope for Charlie’s future. Wearing “Dang Hopeful” on my sleeve while watching Charlie perform the required moves, kicks, oral recitations and board breaks was absolutely the best outfit I could find for the occasion.
Dang Chics has created a T-shirt especially for moms like me. I like it so much and I love that a percentage of sales goes back to the organization that keeps helping our family: Talk About Curing Autism. There are other businesses that support TACA and that’s why you will see me wearing Oakley sunglasses on my sunny days (while I’m wearing a TACA shirt) and purchasing supplements from the companies that give back to TACA. These amounts just from my few purchases add up to a small amount. But for all the Dang Chics out there, this adds up to helping families. Like mine.
Charlie passed his test. He is now a junior black belt. And in all the pictures from that special day, I proudly have ‘Dang Hopeful’ on my sleeve.
By Lisa Ackerman
As promised, we stated we would update you on the latest in stem cell research. We have written about Dr. Chez’s stem cell study in past TACA blogs (1.)
As a reminder, we know stem cell therapy offer treatment solutions for many other conditions (such as leukemia, lymphoma and other serious medical issues.) An FDA pilot study will look at stem cell therapy from cord blood & autism as a possible solution for treatment. The timeline for this pilot study is 1-2 years. Dr Chez’s study initial results should be out sometime before the end of 2014.
A new study is about to launch at Duke University with lead investigator Joanne Kurtzberg are trying to find out whether stem cells taken from frozen cord blood can improve autism symptoms (2.) Experts caution that the trial is premature. Here is what they had to say:
Early animal studies have shown that stem cells isolated from umbilical cord blood can stimulate cells in the spinal cord to regrow their myelin layers, and in doing so help restore connections with surrounding cells3. Autism is thought to result from impaired connectivity in the brain. Because of this, some groups of children with the disorder may benefit from a stem cell transplant, Kurtzberg says.
But others are skeptical of the approach. Autism is a complex disorder with many possible causes. Also, it’s unclear how stem cells derived from cord blood can improve connections in the brain. Given these important caveats, it’s too soon to conduct a test of this scale and investment, some experts say.
“It’s probably premature to run large trials without evidence that they have a therapeutic effect that [we] understand,” cautions Arnold Kriegstein, director of the Broad Center of Regenerative Medicine and Stem Cell Research at the University of California, San Francisco.
We will be watching new developments on both studies referenced in this blog and share the updates with our members. We are excited about the potential of stem cells for candidates who can benefit from this procedure. There is still so much to learn before this is a readily accessible, insurance paid procedure for those in need.
1) http://tacanowblog.com/2012/10/08/stem-cell-update-in-the-news/ and http://tacanowblog.com/2012/09/05/stem-cells-and-autism/
TACA Facts – a new series in collaboration with AUTISM LIVE
We are very excited about a new video series in collaboration with our friends at Autism Live. In this blog there are four new shows to share with families and answers to their frequently asked questions.
This is the Autism Live landing page where we will share all future program segments: http://www.youtube.com/playlist?list=PLzpc1lUvttW9p3hfqDE4f885Xcuo8b7oa
Other future TACA FACTS topics include:
- What if my child is a non-responder?
- Talk to me about puberty.
- I’ve done everything, now what?
- What are some exciting new treatments?
- Everything costs money! HELP!
Please remember: TACA is a parent support organization that provides free information and resources to families. Talk About Curing Autism (TACA) provides general information regarding medical research, treatment options, therapies and nutrition to the autism community. The information comes from a variety of sources and is not independently verified by TACA. Nothing presented in print or at meetings should be construed as medical or legal advice. Always consult your child’s doctor and therapy team regarding his or her individual needs.
Got a question? Please send it to email@example.com
By Holly Bortfeld
The US Government has spent $1.7 Billion dollars in your child’s name under the Combating Autism Act (aka The CAA). Do you feel your child has benefitted from any of that money?
“How about all of the new treatments that money created?” Nope, not one.
“How about the deep cuts in prevalence?” Nope, that went up over 7000% (almost 15,000% if you start when the government started “watching” autism). And average age of diagnosis went up too! Cases prevented? 0.
“Ok, what about all the improved services, reduced waiting lists, new residential facilities, supported job coaching, respite, wandering safety and educational placements?” Nope, they didn’t spend a dime on those.
Are you ready for 5 MORE YEARS of that!!??
Neither are we. Here’s what you can do NOW. Not next week. NOW.
We have less than 36 hours to stop this bill from going through as is.
All it takes is ONE senator to stand up and say, “I am NOT going to support this bill as is” to stop the bill from racing to the President’s desk.
These seven senators are the ones most likely to hold the bill.
CALL THEM TODAY, AND ASK THEM TO HOLD THE BILL!
Senator Tom Coburn, 202-224-5754
Senator Ted Cruz, 202-224-5922
Senator Rand Paul, 202-224-4343
Senator Mike Lee, 202-224-5444
Senator Roy Blunt, 202-224-5721
Senator Ron Johnson, 202-224-5323
Senator Jim Risch, 202-224-2752
ASK THEM TO HOLD S.2449, THE AUTISM CARES ACT, UNTIL IT CAN BE FIXED.
They have been getting lots of calls. Your calls will be brief and painless, but necessary. If you’ve already called, call again.
(Feel free to call your own senators as well. It can’t hurt.)
Act now, or we’ll all wait 5 more years for another chance at a bill that would actually help our kids and adults with autism.
To learn more about the Autism Policy Reform Coalition click here http://autismpolicy.org/our-mission .
By Lisa Ackerman
Recovery from autism happens (1.) As promised I will keep sharing those stories! Meet wonderful Christian. Any parent would be proud of this great graduate. But watch and you will see that there is so much more to his story.
Not only has he overcome and recovered from autism, but his description on how an autistic trait can really help lead to success is amazing.
Congratulations Christian! He has been accepted into NYU’s Tisch School of Music, but he has elected to begin his general education at a local community college this fall and transfer when he is ready for greater independence. I adore this family. Big hugs to Doug, Andrea and his sister Marley. Thank you for sharing Christian’s wonderful accomplishments with us. We cannot wait to hear about what’s next in Christian’s future!
And for TACA families: there are many more congraduation stories rolling in. Families who were once told “there is no hope, nothing you can do” are sharing their wonderful stories with us. We have much to be hopeful for. The reality is that autism is truly treatable!
By Lisa Ackerman
This blog is not for families living with autism as they are well aware of this information. This blog is for you, the American taxpayer not living with autism in your life. You need to care about autism because you know what – your taxes are about to skyrocket. Please read.
Autism now hits 1 in 68 US children. It is 1 in every 42 boys. In contrast with the 1970’s when autism affected 1 or 2 in every 10,000 US children (1.)
A new study has defined the cost of autism (2.) Here is what they had to say:
The parents of children with autism often have to cut back or quit work, and once they reach adulthood, people on the autism spectrum have limited earning potential.
Those income losses, plus the price of services make autism one of the costliest disabilities – adding $2.4 million across the lifespan if the person has intellectual disabilities and $1.4 million if they don’t, according to a new study published in the journal JAMA Pediatrics.
This study is missing all the costs. The costs that parents of families living with autism face are much higher.
- Applied behavioral analysis therapy (proven to help individuals with autism)
- Speech therapy
- Occupational or physical therapy
- Social skills therapy
- Educational therapies and support to shore up learning deficits
- Medical bills
- Loss of wages
- Legal fees to fight for services
- Additional food costs for special diets
- And more not in this list
There is an average cost of $60,000 per child with autism every year. But this is another study and an estimate. In my experience based on 14 years of TACA parent feedback, I would say that this estimate is low.
These costs do not seem to account for the following:
- What the school districts cover (which is never enough or per the Individualized Education Program – IEP for short. Read more about what every child in the US in entitled to a free and appropriate education under reference 3.)
- What health insurance covers
- What state and federal covers
The costs are higher. In fact, much higher. But here is where taxpayers need to listen up. This is how autism will affect your family:
- What happens when parents die? The cost to institutionalize an individual is $100,000-$200,000 per year. And please note, individuals with autism typically live as long as other people in society. I also know these costs vary based on the individual and their needs.
- Special education costs are soaring and have never been fully funded through IDEA (4.) Some of the funds are pushed from regular to special education which are still inadequate to fund services.
- Legal fees to fight parents in order to not pay for needed services come from your tax dollars. There are no punitive damages for school districts who do not deliver on IEPs and the important services they are supposed to provide. It’s a pay now or pay later penalty.
A great Fox news story covered the reality of the new survey estimating autism costs. The families interviewed agreed that the estimate is too low (5.) I love this news report because it highlights the truth. The realities we should face and the families we should help.
I am missing other costs such as when families need counseling because of the stress they must live with daily. The cost and huge toll on families who divorce. What happens to the other children living with sibling diagnosed with autism? We haven’t even calculated the potential future costs there either.
But there is good news. Before I share the good news, please note that TACA is not a research facility we are a small non-profit with an even smaller annual budget. From the small sampling of data that we have gathered at TACA over the years, (where we have tracked children diagnosed with autism under the age of 2) if they received early intervention and medical attention unique to their needs, they had a 75% opportunity to have the diagnosed removed by Kindergarten. This is a small sampling of less than 50 families. None the less, the results are impressive. As taxpayers you should want to make that investment early, so these individuals become future taxpayers when you will need help collecting social security later in life. We should and need to invest. Research needs to be placed in this critical area.
The bad news is that the Federal advisory committee appointed by the government designed to find answers for those impacted by autism since 2006, is the Interagency Autism Coordinating Committee (IACC) and their results are heartbreaking. They have been funded $1.6 billion in taxpayer funds and have practically done nothing to help with the autism crisis. We have shared that information many times on this blog. For background, please read so you can see why this group of individuals need to be fired and new resources put in place; resources that truly care to act for the benefit of helping families (6.)
This blog could go on for 10-20 more pages. I am passionate about this cause because I live it and work everyday on behalf of families living with autism. I care. But here’s the deal I need to get you the non affected tax payer to care. This is a complex issue affecting America’s youth. You need to care. You need to learn more. We need to start caring and acting for a better future of our children. We must care because we cannot afford the future ramifications. The best and the brightest are going to be needed to come up with the right solutions. We must act now.
3) What is an IEP http://www.ncld.org/students-disabilities/iep-504-plan/what-is-iep
4) What is IDEA http://nichcy.org/laws/idea