By Lisa Ackerman
There are many days I miss Dr. Bernard Rimland. This week is no exception.
He is a true pioneer for families living with autism. If you are not familiar with dear Bernie, please read his tribute (1.) He was a great man.
In my office is a treasure sent to me from Steve Edelson not long after Bernie died in 2006. When I call it a treasure it is. This is a picture of Bernie’s last speech at the 10th anniversary of the DAN conference.
Here is the text (please note there are two words I could not read his handwriting. Even with those mistakes you will see a great man and his lifes work.)
Welcome to our 10th Anniversary DAN Conference!
All DAN conferences are special occasions as you can tell by the excitement, the enthusiasm and the optimism they generate. But this conference is extra special for several reasons.
One reason is that 2005 marks the 10th Anniversary of that DAN! Meeting (actually a think-tank rather than a full conference) at a hotel at the Dallas airport where we convinced a handpicked group of 30 people—26 research scientists and physicians and four non-scientist non physician parents to formulate an agenda to Defeat Autism Now! Two attendees were from Europe, Karl Reichelt (Norway) and Paul Shattuck (UK). The rest were from the U.S. We insisted on an exclamation point (!) after the Now! Because we wanted to make sure that we meant “Now!” and not “someday” which is all that the rest of the world hoped for.
One of the invitees Dr. Sudhir Gupta had already recovered an autistic child, Cindy Goldenberg’s son with Intravenous immunoglobulin (IVIG). Cindy had wonderful before and after videotapes of her son, so there was no doubt that he had been autistic and was now well. That whilted our opportunities- recovery was not an impossibility as the medical established world had us believe.
A major outcome of our 1995 DAN! Meeting was a Consensus Report, authored by my esteemed colleagues Sid Baker and John Pangborn. That 38 Page “Clinical Options Manual” (unfortunately misnamed “Protocol”- it is not a protocol) has gone through 7 revisions, the 2002 version encompassing 244 pages.
This conference is especially special for another reason; beyond its being DANS! 10th birthday; This is the first meeting after our historic October 2004 conference in Los Angeles at which, for the first time in history, a group of recovered autistic children were introduced to an audience in 10 years as a direct consequence of our first DAN! Meeting in 1995. The one autistic child successfully treated by Dr Gupta has grown too many hundreds and the number of recoveries is increasing every day. Soon it will be 10’s of thousands and before too long, autism will be history. I can’t wait!
Let’s Get Going!
His letter is inspiring. He had been hard at work in the autism field since his son was diagnosed in 1958. He started both the Autism Research Institute and Autism Society of America in 1965. I met him in 2000 and his energy and drive to make a difference for the autism community NEVER wavered.
He was so wise, so hopeful and such a bright light.
I look at this letter and know it is more important than ever to continue forward. That’s what Bernie would do. But God I miss him.
By Lisa Ackerman
We shared this article in June 2014. Each summer we need to share this information again. The reason why: in less than 10 days 8 children with autism ages 5-26 have wandered from a safe environment and died.
Please read and share. You never know the life you may save.
============================== Original article
For many families summer is filled with fun activities, vacations and almost always involves WATER! This sounds fun. And it is fun! I have fond memories of summer time shenanigans with my family and friends.
For families living with autism the summer season can be the exact opposite of fun. It can become a giant nightmare. Services and routines are turned upside down. Children with autism can get frustrated without the structure and support school time provides.
Sadly some individuals with autism wander from safe environments. This often occurs during the summer months. Many children living with autism can have the cognitive functioning of a toddler but have the size of a child that should certainly know better. But they don’t, they have autism.
The statistics are sobering, 49% of the kids with autism wander (1) and sometimes with deadly consequences. Forty (40%) of those with autism cannot speak which can make finding them even more difficult. Many are often scared of bright lights, sounds and any commotion around them. They are afraid of the sounds and people there to help them.
Sadly, we know when summer is coming the stories in the news increase. We know from the type of news stories we start hearing about. In a short five weeks, 10 children with autism have wandered and unfortunately died from drowning (2.) 10 children have died in 5 weeks. (This statistic is from May-June 2014.) What is sobering is there are probably more cases. These are only the cases we do know in the news.
I have written about this before (3.) The names and faces of these beautiful kids are burned into my head. I am so heartbroken for their families.
We encourage families to try their very best to keep kids busy during the summer months. Provide them with a detailed schedule of activities. If you are going to the pool or lake, make sure there is continuous supervision provided by more than one person who is familiar with your child.
Here are some other ideas to help:
Ideas to keep kids with autism busy during summer: http://www.tacanow.org/family-resources/during-summer-months/
Our incredible friends at the National Autism Association have done a wonderful job of providing families very useful information to hopefully keep their kids with autism safe at all times. They offer a great tool kit to help families (4.)
In the news, we have seen an average of 3 children with autism wander each month. That number tends to run higher May thru October. What about the ones that don’t make the news? The close calls? Losing a beautiful child is a tragic outcome no one should have to experience. Families living with autism worry about this daily.
I hope you now understand why we fight so hard for our kids. We like kids. No, we love these kids. We fight for therapy, medical intervention and understanding because if they get away from us just for one second, tragedy can ensue. We work hard hoping that someday our kids will understand safety and not need to be closely guarded. Our communities must understand we are loving parents living under extraordinary circumstances. It takes a village to protect some of these children. They shouldn’t face such tragic circumstances. They deserve to reach their full potential.
(Please share this blog with other families living with autism. It could save a life.)
- Big Red Safety Box from National Autism Association: www.autismsafety.org
By Jacqueline Garza
Hi I am a TACA mom and I have an amazing, incredible 9 year old superhero son named Mason. Mason began receiving early intervention at 17 months and was formally diagnosed with autism at 2.5 years old.
In April 2014, Mason participated in Volcom Autism Awareness Day brought to us through TACA Orange County. His Volcom volunteer whose name, Harris, he remembers to this day, and the experience in general has had a tremendous influence on his life ever since.
Since that day Mason has continuously skated 20 plus hours a week. His energy and enthusiasm that can sometimes be overwhelming on a playground is appropriate and even inspirational at the skate park.
He has had the chance to meet some pretty famous skaters (Omar Hassan was so inspired by Mason at the skate park that he took the wheels off of his personal deck and gifted it to him right there in the parking lot) but more importantly has gained the respect of his peers at the skate park.
Skating has allowed him to channel the hyper focus and sometimes obsessive components of his autism and turned them into a drive and determination to be the best skateboarder he can possibly be.
He has gone from needing hand over hand balance help from Harris to skating 11 ft pools. Many times he is the best skater at the park. This has transpired in just one year. Through skating, we have seen exponential gains in his self-esteem and desire to be physically active. Under a helmet and on a board, he can be anyone he wants to be.
I wanted to say thank you to companies like Volcom for their continued support of the autism community. Their support for a community event changed my son’s life for the better.
With the huge rise in occurrence of autism we have to find opportunities that inspires and help our kids. I never guessed this one family outing would affect our family is such a positive way. Volcom’s assistance in helping our children “up their cool game” is a gift that will combat bullying, depression, and low self-esteem in the future.
And special thanks to TACA. From the first time I viewed your website when my son was 15 months old to find the “warning signs” & to the opportunity gifted to him at age 9 your organization has truly supported our family for almost a decade and we are forever grateful for what you do. I am grateful I have a community of support for Mason and I am excited for his future.
Editors note: special thanks to Volcom for hosting TACA for four years of skating fun for families living with autism. Many kids like Mason are experiencing skating for the first time because of their support of TACA. We greatly appreciate their years of support and dedication to TACA’s mission.
To see more pictures from the April 2015 event hosted by Volcom, please see:
by Lisa Ackerman
My 15th autism awareness year has come to a conclusion. I have experienced 15 of these months asking for the same efforts – awareness. With the numbers now being 1 in 68 (1), I would love to meet someone that is not aware or affected by autism and the toll it takes on a family – especially the individual living with the challenges. It would be refreshing to have a conversation that does not involve autism. But I don’t know anyone that isn’t somehow involved in this topic.
After 10 years of awareness, TACA switched our words to ACTION in our communications and efforts (2). We have never looked back. We can no longer choose awareness as a strategy when it comes to autism.
Thankfully, much ACTION occurred in April that will make a big difference for families living with autism. Hundreds took action to help TACA deliver our mission to families who need our help. We applaud and appreciate everyone’s assistance; TACA’s efforts are a drop in the bucket based on what is needed by so many. Families living with autism are struggling more than ever before. During hard economic times, the small resources that were available have decreased in the past three years. For many, TACA is their only lifeline. As a community, we need to do more for these families and their children.
Autism will affect every tax payer. The current annual autism costs are $137 billion a year with no end in sight (3.) As we move into May, know this – our children are still affected by autism. We are painfully aware. The families TACA serve still need help. We thank you in advance for taking action to help so many families in need.
By Paulette– TACA Mom
We have 2 children, both diagnosed with autism. Our daughter, Sophie, is 6 and our son, Charlie, is 4-1/2 years.
Sophie was born prematurely and with many complications after birth and in her first few months. She was severely anemic at birth due to a fetomaternal hemorrhage, suffered a traumatic birth, and a brain injury. She had severe jaundice and feeding difficulties, bloody diarrhea at 5 weeks, constipation from 3 months on, a milk protein allergy, projectile reflux, low muscle tone at 4 months, and from birth always struggled with sleeping. At 6 months her head growth started to accelerate, and by 12 months she was diagnosed with “macrocephaly,” or having a big head.
Since her pediatric clinic focused on infant development, we have detailed records of her developmental milestones. Surprisingly, she developed mostly on track. She was social and happy, babbled, smiled constantly, and laughed. At her first birthday, we thought we were in the clear. We couldn’t believe the obstacles our child had overcome.
When Sophie experienced a major regression following her 15-month “well check-up”, we were completely devastated. We didn’t even know what “Autism” was, and we were utterly confused and lost. But we knew she had changed and had lost many skills, including socialization. It was like the light had gone out from behind her eyes. We had pictures and videos of a previously social and happy baby. Now our child was quiet and withdrawn and no longer babbled or signed. She’d lost the few words she had started to say, no longer made eye contact or responded to her name, and didn’t seem to recognize her daddy. She spent most of her days flipping through books by herself, dangling strings in front of her face, flapping her hands and moaning.
Shortly after our daughter regressed, our son Charlie was born. We were overwhelmed parents in a city where we knew few people, and we were dealing with a newly regressed toddler and a newborn. Our “healthy baby,” Charlie, quickly showed signs of having his own health issues. Despite being a strong “nurser” in the hospital, something changed the day he was discharged. He received his Hepatitis B vaccine and had a circumcision, and when we got home from the hospital, he wouldn’t nurse. Several attempts later, he still wouldn’t nurse, so we started panicking. For the next week, I pumped and my mom fed him by syringe. He lost a lot of weight, but after 3 weeks he had rebounded, was nursing and gaining again. He had some jaundice, but for the most part seemed to be okay. It always puzzled me how he had struggled so much that first week, especially after 2 successful days in the hospital.
Charlie went on to have his own list of diagnoses- eczema at 2 months, constipation at 3 months (just like his sister- despite being strictly breastfed), projectile reflux, rashes, poor sleeping patterns. At 4 months, I felt like his eye contact wasn’t what it should be for a 4-month-old, and I brought it up to his pediatrician. At his 6-month appointment, she did a developmental assessment on him and referred us to Early Intervention services. Everyone wanted to tell me that he would be fine and catch up, but I was learning to always follow my instinct. At 7 months, Charlie had Early Intervention therapies.
At the same time, Sophie was finally diagnosed with autism, and we were told by 2 different clinics that she was on the severe end of the spectrum. One of the diagnosticians told us that she would always be severe, “even if she talks, she will still be severe”.
One of the first therapies we tried with our daughter was speech therapy at a traditional clinic in a hospital. After 6 months of three appointments per week, she had regressed even further. We were frustrated, but a nagging feeling told me something medical was going on preventing her progress. She wasn’t sleeping, her constipation and diarrhea were still a problem, and she had a bloated and distended belly. She had many skin rashes. Her pediatrician encouraged us to continue feeding her cow’s milk and milk products, despite her obvious early issues with milk as a baby. We decided to take milk out of her diet anyway. We had also heard of success stories when parents removed gluten from their child’s diet. So we removed gluten, even though her doctor told us it wouldn’t make a difference and could possibly hurt her to not eat dairy or wheat. Within weeks, we got the first eye contact we had seen from her in many months. Her therapists started to notice the change, too. We also noticed an improvement in her bowel issues after removing gluten and dairy. Moving forward, we knew that our daughter’s issues had a medical basis and as her parents it would be up to us to connect the pieces.
Once Sophie was diagnosed with Autism, and Charlie was showing plenty of red flags, we started connecting with other parents who were dealing with similar circumstances. The more I heard other parents’ stories of regression in their kids, the more I knew what happened to my child was the truth. I learned so much from the other moms and dads those first few years (and I still do). We started changing how we lived our lives as a family- we changed our diets, cleaning products and personal care products, started researching vaccines (something we hadn’t done before our daughter’s regression), and started questioning everything.
We put Charlie on the gluten-free, casein-free diet as soon as he started eating solid foods. But he continued adding to his lists of diagnoses- anaphylactic food allergies starting at 14 months to peanut butter, almond, and sesame, and at 17 months to cow’s milk, goat’s milk, egg, soy, oat, wheat, and eventually other foods and nuts. He was diagnosed with asthma at 23 months, the same week that he received his autism diagnosis. He still struggles with gastroesophageal reflux disease. He has had several Emergency Room visits for asthma and food allergy reactions and has been hospitalized for anaphylaxis twice in the last year
Fast forward to today. With 2 kids on the spectrum, it would be easy to sit around feeling sorry for our kids and for our situation. While we definitely have ongoing struggles with both kids, our children are amazing little people with so much potential. We have made a conscious decision to focus on their strengths and trying to help them become the people they are destined to be, despite their constant struggles and the everyday reminders of where they “should” be right now. Some days are harder than others to stay positive, but when things get tough, we dig in our heels and work hard to find a solution.
At 6 years old, Sophie is no longer considered severe. She is still considered to have “moderate” autism, but we think she is high-functioning. She still struggles greatly with sleep, but we have hope that it will improve as she grows. She is a smart little girl who is always paying attention, even when she seems aloof. She is learning to read and can type like a fiend- she seems to have a photographic memory for spelling and loves to type out her favorite memories with friends and families. She is limited verbally, and still struggles with answering questions and any kind of conversation. But her typing skills have given us a window into her brain and we can see that there is so much going on up there, and it is our job as her parents to help her find her way out. Right now, she is not in a traditional kindergarten setting, but she has an amazing teacher in a small private class, and dedicated ABA, OT, and speech therapists.
Charlie has made great progress since his early delays. While he is not yet close to losing his diagnosis, he is high functioning. His language is progressing every week, which is encouraging to see. His struggles are mainly with social anxiety, sensory issues, OCD and anxiety, social interactions, pragmatic language, and his ongoing medical issues. But he is a smart and funny little guy, who is always showing me a different way to look at the world.
We have been so excited to get involved with TACA. When we were new parents dealing with a regression in our toddler, we had no idea where to turn. I can only think if I had found TACA back then, where would my kids be today? Where would Charlie be if I had learned what I know now, a year earlier? Meeting other parents and networking for ideas and companionship has been the number one best thing to happen to us. I love the way TACA strives to connect parents to other parents. Every time we meet a new family and connect them to the resources they need to help their child, I feel like we are one more family stronger and one more child is going to get the help needed. That is why I volunteer for TACA and that is why this organization is so important to our family.