By Lisa Ackerman
During this time of the year you see a lot of people sharing what they are thankful for. I am no different. I like that this time of the year gives you an opportunity to say thank you to many important people in our lives:
- Thank you to our TACA chapters, volunteers and staff. You are incredible and tireless, always looking to help others learn more about autism and spread our message of hope.
- I am grateful for our TACA Board and their incredible support and deep compassion for the organization’s mission.
- Kudos to our TACA friends: The ambassadors that help us with our mission and the vendors who serve our families. A big word of thanks to the doctors and researchers for helping our kids.
- Without TACA donors, we would be lost. This is a giving group of friends that are driven to keep TACA here as long as we are needed. Saying thank you is not big enough.
Our stars are the families and their children. Thank you so much for caring, driving answers and sharing your stories of healing and treatment (1.) I am in awe of your strength and courage to fight battles, odds and status quo for your kids.
At TACA, our focus is for families living with autism today, not tomorrow. Tools that help, guidance that leads to answers and a community that helps you navigate the journey with a multitude of caring families like yours. Nothing else matters at TACA.
As a reminder, we have two tools that will help you survive and succeed this holiday season:
Looking for some tips on how to celebrate the Thanksgiving Holiday? Please visit: www.tacanow.org/family-resources/thanksgiving/
How about a recipe that will impress your guests, as well as keep your family healthy while dodging common allergens? Check out- www.tacanow.org/recipes
If TACA has helped your family, please do 3 clicks to help us! Help TACA be a winner this holiday season! Please take 30 seconds and #voteyourthanks for TACA http://t.co/1ENzezkf0L
Lastly, I must thank my family for always being by my side. I am the luckiest wife, mom, sister and daughter in the world. Words will never describe my gratitude to you. Happy Thanksgiving!
By Lisa Ackerman
This month, 14 years ago the first TACA meeting was held in my family’s living room. Wow, it’s been 14 years!
Back then, I was scared and starved for information. Our son was 3 years old and diagnosed with autism. We did not know what to do. We were hoping that by inviting families into our home we could learn together and not feel so alone.
The meeting notice I sent out was sent on the internet in the early days. The announcement included my home address and phone number (and thankfully we moved away from that house 12 years ago!)
Are you living with a child with autism? Are you lost looking into diets, special education services, legal issues, therapy options and medical interventions? Let’s learn to find answers for our children together!
How TACA was born was truly an Ackerman family effort involving my husband, daughter and son. Then it eventually expanded to involve the rest of my extended family. Our beautiful daughter Lauren was the main person who encouraged us to start TACA and our first webmaster. My husband found himself in the backyard playing with other children and talking to other husbands while the wives gathered in the living room to discuss topics at hand.
Within six months two incredible things happened:
- We grew out of my living room and had to relocate to a church that could hold 100 people for meetings.
- Several attendees asked about starting a TACA Chapter as all were driving 1-3 hours to attend each monthly meeting. I wrote about that here (1.)
This month alone TACA held over 40 meetings and coffee talks in 20 states (these stats don’t include special events.) I know there is greater need for more meetings and I wish I had the ability to meet those needs. This is why we have added webinars so more people can obtain information even if they don’t have a local chapter in their area (2.)
TACA currently supports approaching 40,000 families through 12 of our programs. We have an incredible staff and a great number of volunteers who help. I am grateful for the TACA model of helping one family, one child at a time through the efforts of these incredible individuals.
This mission has been a blessing and a hardship for our family. It has brought us together to help our beloved family member and help others around the nation. It has also hit us with many challenges, which I won’t cover at this time since we are celebrating an anniversary.
My family has received a lot from having started TACA. I feel like I have aged more, like in dog years!
I am sure my husband misses my supermodel face and body (Ha!) However, the other side of that statement is that I have reaped many rewards from TACA families. I love all our children and firmly believe in their ability to become the best they can be. TACA has also greatly helped me in finding answers for our son, the reason we were inspired to this organization. His name is Jeff; he is my hero.
In recognition of our anniversary this is a quick reminder to state TACA has always done everything on a small budget and courageous volunteers. If TACA has helped you, I would like families and friends to share their gratitude between now and December 3rd. Longtime supporter the Orange County Community Foundation has created a social media initiative to #voteyourthanks so you can vote for the foundation that you support. Please vote for Talk About Curing Autism by clicking here daily: http://www.connectoc.org/vote.aspx. Please share the link with all your friends and family and remind them that they can vote until December 3, 2013.
Thanks for reading about our anniversary and for helping with the #voteyourthanks initiative during this important time of year. We have much more work to do to help families living with autism and appreciate all your support. Let’s see what the next 14 years brings!
2) Find a meeting http://www.tacanow.org/local-chapters/
TACA webinars http://www.tacanow.org/webinars/
3) Orange County Community Foundation – Vote your thanks campaign http://www.connectoc.org/vote.aspx
By Lisa Ackerman
In October 2013, Disneyland, Disney World and other Disney parks announced a major change in the Guest Assistance Card (GAC) that was available for individuals living with disabilities including those with autism. We wrote about the upcoming changes on this blog (1.)
Since these changes, we have reached out to different Disney employees to make suggestions and explain the unique issues that families living with autism experience. We have also asked TACA families to provide feedback given their new experiences since the changes were implemented.
We have received almost 100 stories from families living with autism since the changeover to the Disability Access Service (DAS) was announced. The overall feedback and DAS card transition has not been positive. Newsweek recently reported on this issue (2.)
I urge all families living with special needs to read the NEW Disney parks new Disability Access Service (DAS) card FAQ** with important information, so that in planning your trip, it will yield the best possible experience for your family (3.)
According to many families, the DAS card in its current form does not meet the needs of all families. I have been making recommendations for what WOULD WORK.
As part of my follow up, I received a call from another Disney executive asking for my thoughts and concerns now that the DAS system has been in place over 30 days. I appreciate the call and dialog to hear about the issues, and understand there are steps being taken to address the varied families’ needs.
It is important to note that this process is fluid and our input is being heard. Future modifications will be made based on ongoing feedback.
Here’s what I have learned during my conversation with the Disney executives and families who have visited the Disney parks since the DAS card rollout:
• Know that the line at City Hall where you can obtain the DAS card is a longer line and hopefully it will become shorter over time.
• Be prepared to communicate your specific needs with the Disney cast member at City Hall. If possible, prepare a list ahead of time. You should be very descriptive regarding your child’s needs and issues.
• Think about itinerary planning: What is the desired plan for your visit at the park? (Include information about desired rides, frequency and total number of rides.)
• Disney personnel understand that having to often repeat and explain unique needs can be very hard for many families. If your family is willing to share information only once, ask the Disney cast member to have this information stored in the park’s database. Hopefully, this will help in receiving similar service support when you visit the park again.
• Disney has shared with me that they will not return to GAC policies. They want to resolve each family’s individual needs. They are also working on new technology solutions in the future.
It has come to my attention that some families need to discuss their children’s special needs without their child present. I would urge them to set up whatever environment is most appropriate to best describe individual needs without upsetting the child. Ask Disney for assistance or a private area to discuss any concerns as needed.
I’d like families (especially with annual passes) to provide feedback on their experiences over the past 30 days. The new DAS is supposed to be based on needs and to prevent fraud. If you have additional observations about the DAS card, you may share your experiences here, on this blog, or reach out to Disney. It’s important to communicate your concerns so that any change or new policy regarding this program will hopefully help and not hurt your family. I will continue to advocate for TACA families.
Voice your opinion by reaching Disney via phone or email:
Guest Information & Ticket Sales
Hours to Call
• Monday through Friday: 7:00 a.m. to 8:00 p.m.
• Saturdays and Sundays: 8:00 a.m. to 6:00 p.m.
• Holiday hours may vary between 8:00 a.m. to 5:00 p.m.
Annual Passport Member Services
Hours to Call
• Monday through Friday: 7:00 a.m. to 8:00 p.m.
• Saturdays and Sundays: 8:00 a.m. to 6:00 p.m.
• Holiday hours may vary between 8:00 a.m. to 5:00 p.m.
1) Disney GAC changes http://tacanowblog.com/2013/09/24/changes-at-the-happiest-place-on-earth/
3) DAS Resources
CALIFORNIA: Disney resources
**Disability Access Service card FAQ: https://wdpromedia.disney.go.com/media/wdpro-assets/dlr/help/guest-services/guests-with-disabilities/Disney-Parks-Disability-Access-Service-Card.pdf
Ride details & planning your itinerary: https://wdpromedia.disney.go.com/media/wdpro-assets/dlr/help/guest-services/cognitive-disabilities/Disneyland-Resource-Guests-Cognitive-Disabilities.pdf
FLORIDA: Disney World resources
Disability Access Service card FAQ: https://disneyworld.disney.go.com/guest-services/cognitive-disabilities-services/
Ride details & planning your itinerary: https://wdpromedia.disney.go.com/media/wdpro-assets/help/guest-services/cognitive-disabilities-services/wdw_cognitive_guide.pdf
By guest blogger: Ali Hoffman – TACA Volunteer Maryland
The autism community is the most divided community in the world. Some say it’s a disability, some say it’s an opportunity to celebrate diversity, and most say – that’s not my (child’s) autism. What one group does to support families is viewed as offensive to another and vice versa. On Thursday November 14, Autism Speaks converged on Capitol Hill to address the increase in autism diagnosis, lack of services and support, and demand help for the 2 million families living with autism every day (1.) Many people are hopeful about this initiative, many are thinking it is not enough, and some are outraged that Autism Speaks seeks a cure for neurodiversity.
Neurodiversity: an approach to learning and disability which suggests that diverse neurological conditions appear as a result of normal variations in the human genome. In other words, in some opinions, autism should be accepted and embraced not treated or cured (2.) The path of arriving at autism is different for everyone. For some, autism and symptoms are present at birth. For others, they arrive at autism after a developmental regression and loss of skills. Others watch as social issues become an Asperger’s diagnosis; as a child ages, these deficits affect learning and life. While the arrival of the diagnosis may vary, children and adults are diagnosed as the same under the umbrella diagnosis of autism defined by the DSM 5 (3.) Despite this standard of diagnosis, I can state that within my 7 long years living with a child diagnosed with autism, I have never met a child who has autism like my child’s autism.
I have served the autism community since Matthew’s diagnosis in 2007. I am a proud volunteer at TACA and serve as a mentor to other families on the autism journey. I’ve completed triathlons and have ran races to benefit Autism Speaks. I believe strongly that as individuals and groups, we all have a role to play and a way to help. Our individual experiences drive our advocacy. For our family, it is the consistent lack of access to medical care we have encountered since Matthew’s autism diagnosis and how we can fix this for the 1 in 88 families receiving a diagnosis today.
My son is currently diagnosed with viral encephalopathy, autism, petit mal seizures, severe reflux and prime immune deficiency. The path to learn about his health has been seven years long and involved four medical centers, half a dozen doctors, and a myriad of testing. Accessing care from experts has been a long road of me fighting to get my son care and hearing back: “kids with autism have x issues. We don’t know why and we don’t treat this condition in autism.”
My son has had gastrointestinal issues since his diagnosis and finally last year was diagnosed with severe reflux. The gastroenterologist stated, “He must be retching after every meal?” When I replied no, she was surprised. I told her Matt has a high pain threshold and has probably figured out a coping mechanism for the pain. After treating his reflux, Matt has gained weight, grown a few inches, and is in less pain.
A few years ago, we signed up for a clinical trial on sleep disorders in children with autism because Matt struggles with staying asleep all night. The doctor told me after the first hour of an EEG that my son was having abnormal discharges that would be categorized as petit mal seizures. He asked me if I knew he had seizures. I shared that I suspected he was having seizures but was unable to get our neurologist to order an EEG. Accessing an EEG through that clinical trial, getting a diagnosis, and treating seizures have changed Matthew’s life. His attention improved, hyperactivity reduced, and he became calmer. We’d lost years experimenting with ADHD drugs to help treat Matt’s hyperactivity. No drug ever worked but with the introduction of seizure medicine, we saw great improvement which has improved his ability to access school and therapies.
In reflecting, I decided my goal was to help families like mine access medical testing and treatment thru a standard of care for Autism. My first step was to spend some time this year learning about the IACC (4) and how this could be achieved. This standard is critical because our children do not present with typical symptoms of conditions and without these symptoms, parents cannot access testing and treatment. I provided public comment to the IACC in April of 2013. I worked for hours on my comments and submitted them by the due date. Upon arriving at the session, we were told there were nine people providing public comment. We were asked to shorten our comments and provide the bullet points. I spent my morning listening to presentations and shortening my comments. As I walked to the podium and stood in front of the panel of well intentioned physicians, advocates, parents, and adults living with autism, I saw the spectrum. I realized I was delivering my comments to the spectrum and trying to get everyone in that room to agree with me would be impossible. I could see the follow up questions – “I am an adult with autism and don’t want to be subjected to an EEG.” “My child’s autism is a gift and I don’t feel he has any medical issues.” After quickly realizing that, I decided to focus my comments on access and choice. I wanted families with a diagnosis of autism to have access to medical testing for common co-morbid conditions. By the end of my two minutes, I could see that I had lost some in the room. I ended with a plea for families like mine to get help, smiled and asked if I was in the right place. My smile and laugh got the attention of the head of the IACC who assured me that I was. I was in the right place, a greatly divided one representing the wide spectrum of people living and caring for those with autism. How can we make progress with this wide spectrum?
The answer is subtyping. I strongly believe that the first step to improving the divide in our community, improve treatment and supports is subtyping. Autism Spectrum Disorder is too broad of a diagnosis. Through subtyping, we will find common ground, peace, and action. Without subtyping, we would have never developed drugs and treatment for the many different kinds of cancer that exist today. For example, the treatment for prostate cancer is very specific and works well with that kind of cancer. If you met a person suffering from brain cancer and things were not going well, you would not offer up your prostate cancer treatment. You’d respect that each cancer was different, hold your tongue and keep a good thought for the person. In Autism, we could subtype based on functioning level (high-medium-low), regressive or non-regressive (pending on whether there were any skills lost), and by underlying medical conditions such as mitochondrial disease or dysfunction, persistent infections, immune dysregulation, seizure disorders, gastrointestinal issues, etc (5.)
If autism was subtyped, we’d meet a person with high functioning autism and as they described their treatment through therapies, their challenges in social situations, and wish them well in their journey. If you met a child like mine, you’d learn about an autism subtype that is moderately functioning, started with regression, and has many underlying medical issues like viral encephalopathy, autism, ADHD, petit mal seizures, gastrointestinal issues and prime immune deficiency. You would listen to the treatment required, acknowledge its severity, and wish us well in our journey. You wouldn’t listen and then recommend social skills classes.
My son Matt’s autism presents many challenges to our family that greatly affect his life daily. These challenges can be significant like his inability to sleep or his required IVIG treatments to support his impaired immune system. When Matthew regressed, his sensory issues had the most profound effect on his life. He sat in his bedroom closet for a month in the dark wearing the one pair of sweatpants he could tolerate. His sensory issues have been resolved through diet and therapy but his severe communication deficits impact his world significantly. Matthew is happy and can be out and about in the community with us. He enjoys movies, restaurants, skiing, and the beach. He can go to Disney World and say thank you to the barista at Starbucks. He does not have friends. There are special needs activities he can attend like karate or soccer but most require an aide. His therapy and medical expenses rival private school tuition in our DC suburb, yet without the prestige of a special blazer or coveted bumper sticker for our car. As a family, we have prioritized Matt’s care as the most important thing we do and are grateful we can provide such strong support.
Despite all the support we provide, the struggle of Matthew’s autism is intense and not to be celebrated. His lack of ability to communicate incites frustration, anger, and self-injurious behavior. If Matthew does not move forward from his current state, he will never live independently or have a job. Matthew’s autism manifests in a way that is detrimental to his life. As a parent, I would never celebrate diabetes or epilepsy. I’d want help, a solution, and a path to improvement. When I meet a family with a child or adult who has Asperger’s or high functioning autism, I am always respectful. I acknowledge that every person’s journey has its challenges. When I meet an adult who is outraged at the idea of a cure for autism, I truly appreciate their thought and realize that we may be labeled the same but we are different. I celebrate Matthew and what he has overcome. I am so proud of him, but I do not celebrate his label.
Autism subtyping needs to happen now. We can then say that high functioning people with autism have special skills, gifts, a better chance at independence and create supports for this group like college programs, jobs, and social skill opportunities. These individuals could also help educate the neurotypical population about high functioning autism and work towards a goal of acceptance. By acknowledging their autism subtype, we would exclude them from conversations that don’t pertain to their type of autism. This will help us to craft programs and legislations that would not infringe on their lives, rights, or experiences. For example, we could say that children and adults with lower functioning regressive autism including seizures and other serious co-morbid medical issues are ones who need help and support of varying levels. This would include medical treatment and putting an action plan together to help. They deserve immediate help and proper treatment. We would hopefully devise best practices of medical treatments and therapies to support them. I would hope then that when an announcement about curing low functioning autism with seizures, gastrointestinal issues and other serious co-morbid medical issues comes through, the individuals in the higher functioning spectrum would think a good thought and wish us well in our journey. I know I would do the same for them.
We should work together to find solutions for those living with autism that desperately need them and enjoy those in the spectrum who are able to function, work and live productive lives. Because one thing we do know about history is that united we stand, divided we fall and no one getting help is not the answer.
2) Neurodiversity http://en.wikipedia.org/wiki/Neurodiversity
4) What is IACC? http://www.tacanow.org/blog/what-the-iacc-must-consider/
5) Children with autism have other health issues https://www.tacanow.org/blog/many-children-with-autism-have-other-health-problems/
Editors note: thank you Matt’s mom for the great blog and volunteer efforts on behalf of families living with autism. I am honored to work with you for a common goal. ~ Lisa
By Lisa Ackerman
On November 13, 2013 Autism Speaks released their National Housing Survey Results. Ten thousand families and some individuals living with autism responded to the survey. The goal was to find more about the needs for individuals living with autism – what happens when these children become adults?
One urgent finding: “84% of caregivers reported that the individual with autism is currently living at home.”
This is the first survey done by Autism Speaks directed to families and individuals with autism. It shares some staggering information and is very important for all families to read.
I know that right now families have trouble getting help to meet their needs. Many do not know how or where to get help in the future. As a society we are woefully under prepared for the large number of children who will soon to become adults and how to meet their needs.
My questions to families: What are your child’s needs? Are you prepared to meet those needs? What happens to your children when you are no longer able to take care of them?
The future is coming. Are we ready?
More from TACA Family stories!
They say autism is a marathon, not a sprint, and I have to say I agree with that sentiment. Our marathon began in 2006 with the arrival of my identical twin sons, born at 26 weeks. Three weeks later we received a call in the middle of the night that baby A was transported to the local children’s hospital with a perforated intestine for emergency surgery. This meant we would visit two separate NICU’s, with two toddlers in tow to visit our 2-pound miracles, who survived despite and because of all of the numerous medical interventions used to save their lives.
Due to their extreme prematurity, we were told by the state’s early intervention providers that they were developing within limits when they “age adjusted,” so when they weren’t speaking, we were told that was normal. After several months of this, our sons received their autism diagnosis on the first World Autism Awareness Day, April 2, 2008. This was a few months after their sisters spent two weeks in the hospital with an infection that almost took her life. She turned 3 in the PICU while hooked up to dialysis machines. She came home a different child. Her older sister started showing signs of vocal and motor tics four months after that hospital stay. She was our only child born full term and even so, she was hospitalized with severe jaundice after receiving the Hep B shot. We brought her back to the pediatrician at three days old and wound up at the children’s hospital for baby’s first Christmas.
In December 2008, our oldest daughter was diagnosed with Tourette Syndrome and ADHD. In 2010, our youngest daughter was diagnosed with Asperger Syndrome, which took me by complete surprise. I was so wrapped up with her brothers that I did not notice the signs until her school had her both girls observed by the district autism specialist, who told me afterwards. This is the marathon they tell you about, but I wanted to take a moment to catch my breath.
A year after our twins were diagnosed, I brought them to their 3-year wellness check while they screamed and cried in their stroller. The pediatrician had prescribed therapy and sent us on our way at age 2. This time he prescribed more therapy. I had read about treating autism biomedically the year before but, due to our limited resources, put the information aside as something we just couldn’t afford to do. I looked at them, crying and miserable after multiple ear infections and doses of antibiotics and had enough. There had to be something more I could do as I could no longer accept that this was it. How could we afford not to?
I went online and found TACA again and joined. I decided to put them on the GFCF diet as I knew I could figure it out and was not going to accept NO for an answer. There was an ARI conference, and although I couldn’t afford to attend, I saw that TACA was hosting a free nighttime session, so I went and sat at the back of the room. At the very end, they asked if anyone had any questions. When I was passed the mic, I asked, “How am I going to afford this?” and started to cry. Quickly introduced to the right people, his is when TACA became a source of hope for me.
I love TACA because not only is it a source of inspiration and hope, it also is a great source of information. We started treating our boys, had a head start on the diet, and I threw myself into reading everything I could on the TACA website and everywhere about biomedical interventions. As a family of six living on a single income, the articles on “Biomedical on a Budget” were a huge help! I attended Coffee Talks, meetings and seminars for free or on scholarship and connected with other parents, who are also a wonderful source of information. My twins are now 7 ½, still nonverbal and severely affected. Their gains are slow, but they are real. We have been GFCF for over four years. I know they would not have kept moving forward and made the progress they have without biomedical treatments and our wonderful MAPS physician. One is very good at using his AAC device and just typed the phrase, ” I want mom” when I took his sisters out recently. My youngest daughter is finally settling into school with the support of a wonderful aide. Our oldest is creative and funny and doing her best as a sibling. Heck, we even won a cruise this spring with Autism on the Seas, which meant we actually had quality family time (with amazing help of course)! Thanks to the support of TACA, family and our community, we have the most important things in a world full of chaos: hope for the future – and strength for the marathon.
To see more on this incredible story including ATEC– please see https://www.tacanow.org/family-stories/our-2-pound-miracles/
To learn more about a MAPS doctor please see: http://www.tacanow.org/blog/treating-autism-maps-doctors-dan-doctors/
Editors note: nothing brings your TACA Friends more joy than these incredible TACA Family Stories. We will be featuring more of these stories in the TACA blog and website to help inspire and empower parents living with autism. We also want to demonstrate that autism is treatable! Enjoy!! And thank you for this beautiful story and family pictures! We cannot wait for the next update! ~ Lisa
By Lisa Ackerman
On November 4, 2013 Johnson and Johnson was fined $2.2 billion in one of the largest health care related settlements (1.) Here is what the press had to say:
The penalties announced Monday involve fines and forfeiture to the federal government and several states. The settlement involves the schizophrenia drugs Risperdal and Invega, and the heart failure drug Natrecor, the company and Attorney General Eric Holder said.
Johnson & Johnson and two subsidiaries “lined their pockets at the expense of American taxpayers, patients and the private insurance industry,” Holder said.
Risperdal is one of the two drugs offered to individuals with autism as approved by the FDA. While this lawsuit is geared more towards elderly care allegations of fraud, it INVOLVES a drug that is commonly administered to individuals with autism.
In the past, this drug has had problems in the autism community. Those issues involve side effects that lead to a lawsuit citing males being diagnosed with gynecomastia (2.) Gynecomastia is defined as the enlargement of breast tissue in males. Sometimes an additional side effect includes lactating breasts (3.) Yes, that means males with breasts that lactate.
It is timely that our recent TACAnow blog “Drugs aren’t always the answer” (4) was shared just one week ago. It’s no wonder that parents are concerned and leery of drugs especially with young children.
As we shared this story with TACA families, I received a note from one of them:
My son was offered Risperdal by a psychiatrist at age 2. At the time, he had no aggressive behaviors, just wasn’t developing speech and was stimming all the time. The doctor told me it was “for autism.” I knew nothing of biomed back then, but fortunately alarm bells went off and I said no to his offer.
I wish this was the first time we received a parent report like the one above. We have heard similar stories many times.
I wish treatment was as simple as a pill. If so, TACA would be ready to share that type of information. We respect and realize that medication can be a tremendous solution for some families, but not for others. It’s up to parents to research what their children need, become aware of side effects and determine what is best for their family.
Here is what parents can do today:
- Get connected with TACA
- Obtain a free TACA mentor
- Attend free TACA meetings and conferences
- Continue to ask questions and seek medical treatments appropriate to your child’s needs
TACA is here to help. Please visit our website for information on our programs and services for families living with autism www.tacanow.org.