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#Presidential Candidates: What should their #autism plan include?

January 20, 2016

whats the plan

By Lisa Ackerman

2016 is an election year that will bring new leadership for the USA. We are being barraged with messaging, commercials and debates from every direction and it will continue to build as we get closer to election day. What I am hoping is perhaps that the autism community can drive some unified messaging and support for individuals living with autism.

As a 501c3, TACA cannot tell members how to vote. TACA can only share information and let them decide.

I am writing this blog to share key points for presidential candidates to consider for their autism plan. Personally, I will also be reaching out directly to each candidate and their staff. My goal is that for families to share these points with their representatives and favorite candidate. Families living with autism have a voice. I hope they use it and either share this plan or speak up with a plan that will help influence action for autism.

WHY HAVE A PLAN IN THE FIRST PLACE? As a country, we need to address this important health issue effecting 1 in 68 every US Children (1.) A more recent parent survey shows the number even higher at 1 in 45 (2.) Candidates need to know this should be a front-of-mind issue affecting many families living with autism. They also need to know that we need help.

Sadly, autism is still the least funded disability in America facing the most children. Since 1999, I have watched three presidents, in almost six terms, watch autism prevalence go from 1 in 5,000 to 1 in 68 yet we are no further along in a strategy to provide meaningful change and help for families living with autism.

Here is the autism plan needed based on my work with TACA as well as TACA’s 15-year history supporting tens of thousands of families:

Plan item One: Perform an autism census

Why: We need to count EVERYONE with a formal diagnosis of autism in an actual census. At TACA we have been asking for this since 2007 through our interaction with the Interagency Autism Coordinating Committee (IACC) (3.) We need to know about everyone; two year olds, 52 year olds and every age in between. We also need to know their needs and the severity of the diagnosis. We are missing crucial data.

To be clear, this full census only needs to count those diagnosed with autism by medical professionals. In addition, we have to include children and adults outside our school system as many families are choosing home school due to the lack of appropriate placement.

Plan Item Two: Provide support to caregivers

Why: Very little to no support is provided now. Families are being crushed with stress, debt, complexity of issues and a multiple areas of need as the child ages, not typically faced by a typical families without a child with autism. We need to provide the necessary support from diagnosis and along the lifespan of the person affected.

Plan Item Three: Ensure states meet their obligations under IDEA Child Find program to identify, screen and refer children with disabilities for services

Why: At TACA, I can tell you this is still a huge problem for families. Again, based on the thousands of support calls TACA receives from parents, this is one of the top issues families face. Often families are told misinformation from the entities meaning to help due to under-funding and staff shortages. Much work needs to be done to meet the need, resolve wait lists and ensure a free and appropriate education mandated by law.

Further, because autism is a spectrum, we need more options, not less. We don’t want to remove any choices, but rather want to expand the options for families and individuals to seek what suits their needs. To that end, limiting options to “inclusion-only” is detrimental to our community.  Not everyone can, or wants to, tolerate “typical” placement in jobs, schools, housing and relationships, so the services and resources need to support all choices.

Plan item four: Increase state compliance with Medicaid and Medical coverage requirements

Why: Families need this help yesterday. Treatment across the United States varies greatly. The American Academy of Pediatrics Standards of Care for Autism should be followed. Based on the thousands of instances of support we provide every year we know these standards are rarely followed. This must change.

Plan item five: Improve access to autism services in the Affordable Care Act (ACA) marketplace and through private insurance for all families

Why: For most of TACA families that we serve, insurance has become harder to navigate in order to procure coverage for best practices, scientifically proven therapies and treatments. The exclusion to my last statement: in states where no insurance act was available or for families new to insurance have better coverage than before. For many families, the red tape and co-pays are cost prohibitive. These two factors stop some families from trying altogether.

Let’s make that better for families. If we invest early in young children with autism, we can see a tremendous cost savings later on in their life. And forget cost savings! Some children can recover from autism and their symptoms and become tax payers. We should at least try with every child. They have a bright future. The ACA is not fixed for families living with autism and needs improvement to eliminate red tape and co-pays for each treatment or visit. Perhaps a monthly co-pay on a sliding-scale based on income could be the solution.

An important part of ACA is to make this benefit available to military, state and federal employees. Right now these families are left uncovered. Our heroes who serve and have served are completely left out of ACA requirements for autism treatments. That should be immediately remedied along with the above health care recommendations. As well as adding all state and federal employees for coverage.

Plan Item six: Address issues harming individuals with autism: wandering, restraint, bullying and seclusion

Why: I love the work of National Autism Association. They have done the research and definition of need in the areas of bullying, restraint, seclusion and wandering. No need to spend millions to do a study! The answers are right here (4).

We need to add this to the autism plan to address this crucial issue. We need the assistance to pass Avonte’s Law S. 163 to protect the almost 50% of those living with autism who wander from safe environments often with deadly results. We need to group these important issues in the safety act proposed. We would also like to see federal funding for first responder training included and mandatory across the country.

Plan item seven:   Plan for adults – what happens when the bus stops coming?

Why: I want to mention something about what happens at age 21, when the school bus stops coming and our kids age out of all supports. Parents become full-time caretakers and have to quit working because there are no programs in place for the affected, so we go from having one person on government assistance to two, then add isolation and it becomes a recipe for despair. While the long-term goal is to create employment for most, it’s not feasible for all, especially in the short-term. We need appropriate “adult day care” and other life skills opportunities for our adults when employment opportunities are not available.

Plan item eight: Re-evaluate the “Learn the signs, act early” funding with the goal to boost early screening rates with a nationwide outreach campaign

Why? This has been a big part of the Interagency Autism Coordination Committee (IACC) efforts since 2006. They have spent $3 billion in tax payer revenue and we are no further to prevention, treatment or help for families. Specifically, they have supported spending $42 million for the CDC’s campaign “Learn the signs, act early.” Since the inception of this campaign the average age of diagnosis has gotten worse, not better, by a month (5.) At TACA, we have suggestions where to go forward in truly assessing and diagnosing autism more effectively.

Plan item nine: Encourage all states to enact ABLE legislation and ensure consumer protection for ABLE account beneficiaries

Why: The recent laws passed do help. Early start and service providers need to assist families in navigating the need to know about, set up and benefit from savings accounts for individuals with autism. For too long, people with disabilities have been relegated to living in poverty because of the government asset test, so this is a good start for parents to save for their children, as well as adults to be able to earn and save for themselves (6.)

Plan item ten: Educate and expand the Adult Vocational Rehabilitation Program

Why: Many families are unaware of currently available programs for adults. We need to scale this program up to educate families about its existence and prepare for the additional children who will become adults. A large point to consider: adults will not be able to work if they don’t receive the necessary treatment and therapies early on at suspicion or time of diagnosis.

This plan needs to accommodate all areas of ability and disability. We need to shoot for the stars but also address the needs of all functioning levels. Consult with groups like TACA who have been working in the areas of autism for over 15 years and can provide insight to drive a well-thought-out plan.

Plan Item eleven: Promote multi-sector awareness campaign

Why: We have two distinct groups to help in a multi-sector awareness campaign. Group one is families living with autism. We would like to drive them to treatment based on their child’s needs. We need to be in front to help families and end the “hopeless” diagnosis, no hope or and lack of help given to most families at the time of diagnosis. Group two is the general public. We would like the general public to understand the autism spectrum.

Plan item twelve: Ensure access to assistive technologies

Why: Technology can change the life of an individual living with autism, especially individuals who cannot speak or have trouble communicating.

Often in schools, technology is outdated, broken or unusable. So many families are offered technology that does not help the individual. The plan needs to include a variety of options and more importantly a way to evaluate options based on an individual’s needs.

One example is the TACA iPad video project from 2011 (7.) Once outdated and expensive technology can now be replaced easily. Training, appropriate applications and monitoring of these solutions must also be part of the plan.

Plan item thirteen: Continue vigorous enforcement and education of Olmstead Housing Act

Why: There are tens of thousands on wait lists for help in the area of housing. We are very close to two critical tipping points: children aging out of support and aging parents. A special task force is needed to identify the needs.

Plan item fourteen: Significantly increase funding and revamp autism research funding

Why: Sadly, past autism research is a big area of concern. This is where the US government has dropped most of the $3 billion in funding with the IACC recommendations. We are no closer to any new treatments or prevention for families since the IACC started in 2006. We have dumped millions in genetic research. I do not suggest having the government run this anymore as their programs are not generating results with tax payer dollars. You can read more about the history of the IACC and their lack of accomplishments here (3.)

We need the government to fund innovation. First we need to start with subtyping. By subtyping groups, those who wish to have help or need help can be our focus. Some research has been completed but we need to do more (8.) There are some incredible universities and physicians working with autism every day for decades who, with the right resources, could drive positive change with fewer dollars required.   We have seen more innovation and effective treatments from smaller universities and research entities that are privately funded than the government or it’s funded programs has ever produced.

Plan item fifteen: Dedicate new funding to autism protection and advocacy

I would like to see an autism czar that could drive this and help guide the president on action for the pressing autism issues. The IACC is proving to not be a good investment as it stands today. We need to follow best practices used in similar chronic conditions such as what the AIDS, cystic fibrosis and elderly communities have established as guidelines and modify them slightly to meet the needs of the autism community.

 

In conclusion, any plan needs to address the rapid increase in the prevalence of autism and the growing needs of this community. We are very behind in addressing the needs and with the dire predictions of the autism increase becoming more and more prevalent each year (9.) The autism community needs a leader that can take on the issues and drive solutions.

We can no longer continue with autism being the least funded disability in the US affecting the most children. We cannot afford the $237 Billion and rising annual costs (10.) These costs are projected to reach $1 Trillion dollars by 2025. Besides the dollar costs are the human costs. Every person should be valued. Individuals with autism should not be left behind.

Each candidate should have an autism plan. In addition, it shouldn’t be a campaign promise left behind after the election it as has been in the past. It needs to be a priority. We cannot afford the future of 2.5% of the population to continue to grow in size, cost and lost potential.

hope lives

References:

  1. Autism prevalence http://www.tacanow.org/news/cdc-releases-autism-prevalence/
  2. 1 in 45 US children have autism – parent survey: http://tacanowblog.com/2015/11/13/autism-is-now-1-in-45-will-anyone-listen/
  3. IACC TACAnow blogs: http://tacanowblog.com/2016/01/04/the-iacc-needs-to-address-autism-and-wandering-how-can-parents-help/ http://tacanowblog.com/2015/08/07/why-would-a-government-panel-question-universal-autism-screening/http://www.tacanow.org/blog/the-iacc-reconvenes/http://tacanowblog.com/2013/12/31/if-the-iaccs-strategic-plans-were-ieps-would-they-be-in-non-compliance/
  4. http://www.tacanow.org/blog/what-constitutes-an-emergency/
  5. http://www.tacanow.org/blog/what-the-iacc-must-consider/
  6. National Autism Association: Wandering, Bullying, Restraint and Seclusion: http://awaare.org/
  7. CDC Learn the signs, act early campaign: http://www.cdc.gov/ncbddd/actearly/
  8. ABLE ACT reference and response http://www.ndss.org/Advocacy/Legislative-Agenda/Creating-an-Economic-Future-for-Individuals-with-Down-Syndrome/Achieving-a-Better-of-Life-Experience-ABLE-Act/ https://www.congress.gov/bill/113th-congress/house-bill/647
  9. TACA autism iPad project: https://www.youtube.com/watch?v=tWtn8MjJx2M
  10. Subtypes in autism http://tacanowblog.com/2014/04/11/science-and-subtypes-in-autism/
  11. MIT dire prediction http://www.autismdailynewscast.com/warning-half-of-all-children-will-have-autism-by-2025/12873/laurel-joss/
  12. Annual autism costs soar http://tacanowblog.com/2015/07/30/the-annual-cost-of-autism-continues-to-soar/

 

Special note: Thank you to the families reading this blog. I would like to ask you a favor. Will you please forward this to your favorite Presidential Candidate and ask them to enact their own plan and to call TACA for help.

Special special note: I would like to thank Holly, Janice and Jackie for helping me edit this large blog. It takes a village to help families and for over a decade they have been part of mine.

The IACC needs to address #autism and #wandering. How can parents help.

January 4, 2016

 

cal to action

By Lisa Ackerman

The Interagency Autism Coordinating Committee (IACC) is meeting again on January 12, 2016 (1.) On the TACA blog we have written about the IACC for years (2.) Let me catch you up:   IACC was founded by funds from the Combatting Autism bill in 2006. About $3 billion has been spent. Sadly, the efforts have not produced any measurable results. No breakthrough in science or treatment. No help for families living with autism.

But what we have experienced during this time is a rapid increase of autism. A recent parent survey in October 2015 concluded the 1 in 45 autism prevalence rate (3.) The IACC met one time in 2015. We see little urgency in their actions and ability to drive positive change for families. It just isn’t happening. Maybe this new committee debuted in November 2015 will be different.

The autism community has also experienced tragedy. Individuals with autism are wandering and dying. Already in 2016, Jayiel Vega Batista wandered on New Years Eve and died (4.) He was only 5.

Jayiel

National Autism Association has done a great job citing stats and providing prevention options for families living with autism. They also have done a great job advocating and drawing attention to this important issue facing many families living with autism. TACA along with other autism organizations collaborates on the Autism Safety Coalition. We need help to stop the tragedies. The hard facts is 49% of individuals with autism wander often with tragic results like with Jayiel (5.)   We have been writing about tragedies of autism, wandering and death in this TACA blog (6.)

Since June 2015, 30 individuals with autism have died due to wandering. Those are just the cases reported. We are saddened by these lives lost. Now we need to channel our energy to drive action. Action that can save lives. We need to act for all families who live with the fear of their child escaping from a secure, safe home with deadly consequences.

Here is what I suggest you do: Time to activate the IACC.

ACTION: You can sign up to speak at the January 12 meeting. You can also write a letter to be read by IACC – the deadline for the January 12 meeting is January 5 at 5:00pm EST. Please send your letters or sign up to speak here (7.)

What is needed:

Avonte’s law needs to be passed. Avonte’s law is named for another child diagnosed with autism, wandered and drowned (8.) Avonte’s law is an important bill that needs to move forward. In summary, it is a proposed Federal bill that would allocate $10,000,000 to work towards education and prevention of autism and wandering. More details on the bill can be found here (9.)

Sure we have a lot of ground to cover with the IACC. They need to move towards productivity from science to cause (including environmental issues,) declaring autism an epidemic, work with a sense of urgency, prevention and funding for families living with autism. But how about first we work on helping individuals with autism live and not die first then we can tackle the rest.

 

References:

  1. IACC January 2016 meeting: https://iacc.hhs.gov/events/index.shtml
  2. All IACC blogs featured on TACA http://tacanowblog.com/2015/08/07/why-would-a-government-panel-question-universal-autism-screening/
  3. 1 in 45 survey: http://tacanowblog.com/2015/11/
  4. Jayiel Vega Bastista; http://www.nbcnews.com/news/us-news/tablet-found-belonging-missing-pennsylvania-boy-autism-jayliel-vega-batista-n489196?cid=sm_tw
  5. National Autism Association – http://awaare.nationalautismassociation.org/
  6. She must really like kids http://tacanowblog.com/2013/05/22/she-must-really-like-kids/
  7. Where to send your IACC letter by January 5th IACCPublicInquiries@mail.nih.gov
  8. What happened to Avonte: http://nymag.com/daily/intelligencer/2014/03/life-and-death-of-avonte-oquendo.html
  9. Avonte’s law: https://www.congress.gov/bill/114th-congress/senate-bill/163 http://autismsafetycoalition.org/take-action/

Thanks 2015 and Hello 2016

December 28, 2015

2016

by Lisa Ackerman

It’s the end of another year, 2015 is almost gone! Um…. That went fast!! Where did time go? (I know I write a variation of this every year. But I am serious about the time flying part!)

As usual, TACA was a blur of constant activity this past year; helping families, building relationships, and expanding our community. This could not have happened without the fantastic people dedicated to the TACA mission. Thank you all.

Since TACA’s beginnings 15 years ago, I have always sent out an end of year update. This year as usual, I would like to begin with a Jeff update—he is my TACA inspiration and keeps me going.

I cannot believe the Jeff man is now a man and is 18 years old. He continues to make progress every year. He is half way through his senior year in a typical high school (GULP!) I cannot believe he has almost accomplished this major milestone (with many more to come.)

He still loves to play the drums, ran and lettered in the school cross country team and plays golf. By far his favorite activity is going to concerts (6 concerts in 2015 and if he could do more HE WOULD) and movies with friends.

His greatest strength is his ability to rise to meet new challenges with a smile on his face and a positive attitude every day Yes!! Every day! I am hoping someday to acquire this skill.

Jeff has come so far since his autism diagnosis. The professionals had dismal predictions for the future. I’m glad to share we didn’t believe them and held onto our dreams for our son. He has worked very hard to overcome many obstacles. One important lesson remains: Our kids need us to never give up. I love TACA families because they have hope and believe in a future for our all of our kids.

NOW on to TACA: this incredible team of volunteers and staff work so hard in providing education, support & empowerment to families living with autism. Here are some highlights from 2015:

  • Our parent support team & volunteers responded to almost 30,000 calls (in English and Spanish) for empowerment and support via phone, email and live chat. (Note: we are still collecting data and will finalize this number in January.)
  • Chapters: Our volunteer chapter leaders and key volunteers brought TACA’s mission to their community. TACA held an average of 60 meetings & coffee talks per month across the U.S.
  • Over 5,000 attended free family events across the United States hosted by Chapters.
  • We distributed almost 2,000 Autism Journey Guides–free to families.
  • We educated over 1,100 families through free live webinars.
  • TACA receives almost 90,000 unique visitors to our website each month.
  • TACA provided over 200 medical, swimming, iPads, social skills, conference and other community based grants.
  • This year, TACA Mentors made almost 380 connections by supporting families needing assistance on their autism journey.
  • Over 20 guest writers contributed to the TACAnow blog site.
  • Over 4,000 Facebook, Twitter and Pinterest posts including TACA inspirational family stories, autism news, family-friendly and allergen-free recipes, tips, and TACA articles posted daily.

This is only a portion of what TACA has accomplished in 2015. We will be publishing a full accomplishments report in January. As 2015 comes to an end, TACA counts over 48,000 families affected by autism in its community.

I know I have said thank you in general, but, I have some specific shout-outs for the TACA staff. Thank you to Jackie, Di, Tracey, Moira, Holly, Cindy, Janice, Nicole, Sim, Susan, Steph, Heather, Jacey and Ace. Thank you to the best Board who serve, guide and fundraise to help make it all happen (Glen, Pat, Dan, Elizabeth, Robby & Keith.) A special, heartfelt thank you to our INCREDIBLE Volunteer Chapter Coordinators and Parent Mentors who serve selflessly. You are core to our mission of Families Helping Families and ensure that our programs reach many in local communities. TACA would be lost without this incredibly dedicated team of over 500 volunteers providing Real Help Now.

2015 is our 6th year for TACA’s Ambassadors and Physician Advisory Team. They support TACA in their professional circle and talk about curing autism on a regular basis. These friends have made invaluable contributions to help champion the mission with webinars, conference lectures, donated appointments, helped raise much needed funds and giving much of their valuable time.

Much gratitude to the over 2,000 businesses and individuals that made donations in 2015. Our major donors include: Happy Family Brands, Jack FM/KROQ, OC Community Foundation, Wal-Mart Foundation, Kohls, The Hermann Family, Alderson Family Foundation, Bikram Yoga in Silverlake, Enzymedica & Autism Hope Alliance & Enzymedica, Volcom, Gladiator events with Dan “Nitro” Clark, Inhouse IT, InCloud IT, Midwest Insurance, Mendability, Hawaii Autism Foundation (Beautiful Son Foundation), The Carney Family, Elizabeth McCoy, Hawaii Hotel Industry Foundation, Microsemi, Ready at Dawn, Cellpoint, Jimmies Golf, Whole Foods, Pacific Life Foundation, Allergan Foundation, Miracle Foundation Fund, Aspiriant Holdings, Gupta Family Foundation, Ion Cleanse, Nourish Life, Operation Jack, A Ride for Autism, Master Supplements and countless others. To everyone who helped us financially, thank you for always believing and supporting our mission.

And to TACA Families:   we believe in you. We believe in your kids. Keep up the efforts because everyday you are step closer to healthier kids and your goals. We are proud of you! I hope you get an opportunity to check out the over 50 stories (with many more coming) on our 4th annual TACA Celebrations efforts where we celebrate our kids accomplishments over the last year. You can see these on our foundation Facebook page at this link: https://www.facebook.com/talkaboutcuringautism/. They are truly inspiring.

The economy continues to affect TACA families and this foundation in a major way. Top that with autism is the least funded disability in America with the least amount of funding. As with all non-profits the economy has had an impact on donations. Despite this challenge, we have found ways to acquire help and continue providing our programs. We are always looking for more help for our mission.

Autism Costs and prevalence

In closing, the hope I have for my child and all our children remains –together, we will work towards the future and create positive outcomes for all of our kids. Thank you for being a friend to families living with autism.

 

Happy New Year!

All my best for 2016 & beyond,

Lisa Ackerman TACA Executive Director & Founding Board member, Mom to Jeff & Lauren, grandma to Will and wife to Glen

ack pack picnic

 

P.S. We need additional support for 2015. If you have a friend that would like to make a donation in your family’s honor please help https://www.tacanow.org/ways-to-help/donate/.

 

Things that go bump in the night

December 16, 2015

JBAK0563

Guest blogger & Autism Super hero sibling: Culzean Giammatteo

 

After the school year came to a close in the summer of 2013, I spent most of my time indoors, on whatever electronic device I had access to, reading. On this particular evening I was reading like I normally do and my brother, Vico, was next door playing his cheesy music at an unbearable volume. I was internally debating if the issue was important enough for me to get up and rifle through my things for some headphones. I absolutely despised the song that happened to be playing at that moment, because it was such an earworm that it would bother me for weeks on end.

My name is Mike and tonight I’m your robo emcee. Yeah that’s me!

And there went the chorus again. This was about the fifth time I had heard this song that day and I was beyond sick of it. I was had decided to get up and ask Vico politely to turn the music down which would result in him yelling at me to get out of his room and I would have to find my headphones anyway. That’s when I heard the crash.

It sounded loud as though several heavy things hit the ground at once. It was followed by more rustling and banging around. My heart rate escalated and I jumped out of bed, running immediately to his closed door. Vico had a history of seizures, but he hadn’t had one in years.

Just pick a song from the list and prepare the CD. Oh I got it!

I knock at his door loudly, asking nervously from behind the wooden entryway, “Vico?”

Yeah, and Mike’s on mics and you know that he’s doing the deed.

There came no answer, just more rustling and a few unintelligible moans. I knew I should open the door and get him into the rescue position, but I was frozen in fear. I had never seen Vico having a seizure before. When he’d had them before, I was young and my parents kept me away from him. I had no idea how I’d react to it. What if I panicked?

‘Cause nothing’s got a party going high like a little karaoke ‘doke. Oh!

I ran down the hall and into the den where my parents were watching TV. I stopped right in front of the screen, the word, “Help,” at the tip of my tongue. My mom hastily paused the show they were watching and looked a bit irritated at my unexplained presence right in front of the TV.

“What?” She asked.

“I think Vico is having a seizure,” I finally spit out.

The slight annoyance on her face quickly turned to horror as her and Dad bolted back up the hallway. I didn’t follow. I shut the dog in the den and slowly walked back to Vico’s room, stopping just around the corner so I couldn’t see what was happening. I wasn’t supposed to, right?

My name is Mike, come on! Let’s robokaraoke.

After a couple moments of this my dad realized I was standing out there and ushers me into the room. I stared, wide eyed, at the sight of my brother, three years my senior, twitching and moaning on the floor. He had a gash on his eyebrow, presumably from when he fell, that was bleeding.

Don’t you want a, don’t you want-

I shut off the music, not able to stand such a cheerful tune. Then there was nothing to do, but wait. The seizure broke in under two minutes, but it felt a lot longer to me. Mom and dad coaxed Vico, who was slurring and bleary eyed, into bed and I ran to grab a wet washcloth for his eyebrow. I needed to be useful.

After it was all over, Vico was safe in bed and dad was keeping him company, I sat on my own bed, leaning against my mother. I was mostly silent, internally berating myself for not just opening the door. In the middle of my self-shaming, my mom put her hand on my knee and thanked me for coming to get her. It wasn’t until later, when Vico’s black eye and cut were healed, and I found an article she wrote about the incident for her non profit assisting parents of children with autism, that I was able to accept that I did everything I could have done for Vico.

 

Culzean and Vico 4

 

Editors Note: We are so grateful for siblings like Culzean. She and many like her will drive positive change for those living with autism. Our future is bright because of them. Thank you Culzean for your insight and love.

#GivingTuesday: This history & how to help non-profits

December 1, 2015

giving tuesday 2015

By Lisa Ackerman

What comes after Thanksgiving Thursday? First, Black Friday. Then, Cyber Monday and don’t forget #GivingTuesday! Today is a day to support nonprofit organizations across the country.

Just as Black Friday and Cyber Monday have become traditions in the United States, organizers are seeing #GivingTuesday as a tradition celebrating the joy of giving. What does it mean to give? It’s different for each of us. Some of us give money, some give time, some give resources and some give their passion toward helping a cause.

This History:  the first #GivingTuesday started November 27, 2012.  #GivingTuesday is your annual opportunity to tell everyone what and who you support and why it is important. You can opt to support TACA and for families living with autism in a variety of ways – you can donate, volunteer, provide a valuable service or lend your voice through advocacy.

Now – how you can help: this year TACA has been selected to collaborate with Volcom. We are grateful for their support. Here is how this will work:

  • Make any purchase in store at Volcom or www.volcom.com on December 1, 2015.
  • All purchases will receive a limited edition Volcom/TACA sticker.
  • Volcom will contribute 5% of your Volcom.com purchase to TACA to provide support and hope to families with autism.

Special thanks to Volcom for their help and for TACA supporters to help share the message of #GivingTuesday.

To help:  Shop Volcom today at www.volcom.com

Or donate to support families living with autism at https://www.tacanow.org/ways-to-help/donate/

TACA_instagram

#Autism is now 1 in 45 – will anyone listen?

November 13, 2015

my heart is so tired

By Lisa Ackerman

In December 2013 the University of Minnesota published a study regarding the Autism Spectrum Disorder (ASD) population in Minneapolis. The results documented the  ASD overall rate: 1 in 48.  Another major finding from the Somali population showed autism rates are 1 in 32 (1.)

In a new report released today two startling findings (2) were announced:

  • 2.24% of all US children have autism (increased from 1.25% from 2011-2013 data)
  • 1 in 45 are now living with autism (increased 1 in 68 from a 2010 survey)

What is always incredibly shocking to me is the explaining away of any new, increased prevalence number. Here is what USA Today (3) reported:

“A new survey has found a big jump in the number of children with autism, although researchers caution that the increase is likely due to the way that questions were asked.”

I am wondering what is the most popular question today for expectant parents? Is it what car seat should we buy?  Should we let the baby sleep in our bed?  When should we start feeding the baby solids? Bottle or breast fed? Or is it: WILL OUR CHILD HAVE AUTISM?  Sadly the rate continues to go up and for anyone planning on or having a baby I’d move the autism question to the top of your list.

baby_boy_facing_away_purple_lr

Remind me again how autism is not declared an epidemic? Why is it most wish to explain autism away? Meanwhile, at TACA, we add 600 new families every month that are struggling with an autism diagnosis and concerned about their child’s future.

I am not surprised by the new autism prevalence, I am just sad. What does the number have to be for someone outside the autism community to care, activate and drive for answers?

Autism Costs and prevalence

(Note: We just made this graphic 2 weeks ago.  We have to update it again.)

References

  1. http://tacanowblog.com/2013/12/19/autism-in-minneapolis-1-in-48/
  2. http://www.cdc.gov/nchs/data/nhsr/nhsr087.pdf
  3. http://www.usatoday.com/story/news/2015/11/13/study-finds-more-than-2-children-have-autism/75673774/

 

The Unexpected Benefits of Team Sports

October 28, 2015

 

By: Melanie Smith, Parent of an adult son with autism

 Spirit League Photo

We have all seen kids around town heading to games in baseball or soccer uniforms. Their teams are concentrating on mastering the techniques and skills necessary to advance to the next level of the team sports ladder.

But when it comes to team sports for children and teens on the autism spectrum, the emphasis is completely different: it’s not about the sport – it’s so much more.

What are the benefits of team sports for children and teens on the spectrum? While they might look fantastic in their team uniform, will they learn anything of lasting value?

The answer to both questions is a resounding yes

Many experts have documented the expected benefits of physical exercise to individuals with special needs such as the improvement of coordination, boosting of the immune system and improvement of mood.

However, there are many unexpected benefits of sports programs designed for special needs such as:

  • The focus is on team building, making friends and improved self-esteem, not competition
  • Athletes gain a sense of accomplishment each week that is not based only on skill level but simply by showing up in uniform and getting high fives for working at their own ability.
  • The athlete gets a trophy with their own name on it to put in their room – just like other kids.
  • Parents spend time with other parents who “get it” and establish a sense of community and support.
  • Athletes and parents alike get the feeling of belonging and not standing out; especially when an athlete gets upset and has a behavior on the field/court. Everyone at the game understands and works together to turn it into a positive outcome.
  • It is a fantastic opportunity to practice social skills with teammates in a non-classroom environment. Whether it’s just kicking a ball back and forth or learning to congratulate teammates, the athlete is encouraged to communicate in both verbal and non-verbal ways.
  • Team sports provides an additional opportunity for dads and other male role models to spend time with their athlete. During the week, children with special needs spend time with therapists and educators who are predominantly female. On the weekends, athletes benefit from interaction on the field/court from both male and female coaches and Team Mentors.
  • The athlete is able to practice learning new skills from new people; all in a “safe” environment.

Bryan’s Transformation

Bryan recently had his first experience in playing team sports with a local sports league aimed at serving children and teens with special needs. He started his first day of basketball afraid to walk onto the court; hiding on the sidelines. Coach Chuck, a Spirit League Board Member and former Athletic Director, sat on the floor with him, offering encouraging words. While it took nearly 30 minutes on the sidelines, Bryan eventually joined his Team on the court; passing the ball to his teammates.

Spirit League Photo 2

 

The next week, Bryan walked onto the court of his own accord, timid, but willing to participate in circle time activities with his Team. By week 3, Bryan was actively playing ball with his Team – The Rockets. The picture of the fearful athlete who started just weeks before was forgotten. It was an amazing experience to watch the confidence build in Bryan each week from the encouragement of his coaches and teammates. By the end of the season, Bryan’s confidence was sky-high. He held his trophy with a huge smile; knowing he had come a long way. The cheers from the stands recognizing Bryan for his efforts were almost as big as his smile.

 

About Spirit League

 

Founded in 2004, Spirit League was created by the parents of children who were unable to fully participate in team sports due to challenges. Spirit League is tailored to meet the specific needs of children on the autism spectrum and other developmental or physical disabilities who are between the ages of 6 and 20+ years old and who are ambulatory. For our athletes, our goal is to foster self-esteem, enhance social skills and build friendships. For our parents, our goal is to strengthen relationships, provide support and develop community.

 

Three sports are offered each year including basketball (January – March), baseball (April – June) and soccer (September – November). For more information or to register for the 2016 Basketball Season (register November 1-30, 2015), go to www.spiritleague.org.

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