By Lisa Ackerman
Every year, I am full of excitement; it’s not a major holiday or my birthday, but it is absolutely my favorite time of the year. It is PICNIC TIME!
I am happy to share with you the upcoming 10th Annual Family Picnic on Sunday, June 2nd at the Phoenix Club in Anaheim, California. A fun-filled day designed specifically for kids affected by autism, their families, and friends. We have visitors from several states in attendance for this huge event.
The one-of-a-kind TACA picnic features an amazing array of choices in our food court (including gluten-free, casein-free items), fun carnival-like activities for kids, a vendor resource fair, and a silent auction to help raise funds to support the 32,000 families we serve.
This year, we have new, great activities ranging from a petting zoo, horse and carnival rides, Autism Youth Ambassadors offering activities for our teenagers, and over 30 other partners to make this an amazing day! There will also be a NEWLY EXPANDED meet and greet opportunity and educational roundtables with Drs. Dan Rossignol, Richard Frye, Elizabeth Mumper and Richard Neubrander. We are also fortunate to have Fullerton Cares/Bourbon Street providing food for our families’ enjoyment.
TEN years ago, a creative TACA mom proposed a picnic for families with autism – a day when families could be themselves, not worry about tantrums (or dirty looks), have allergy- free foods available, and play and laugh with other families “just like us” in a fun and safe environment. For my family, this was the first picnic we ever attended. The sense of community we so desperately craved was restored as we enjoyed the day with many new family friends.
Since that first picnic in 2004, The TACA Family Picnic has grown from 900 to almost 2,000 people, and has become a Southern California family summer tradition. For my 16 year-old son Jeff, and other brave kids living with autism, it’s a fun day to dance, laugh, and play with good friends, typical or not. It is also a day with mothers, daughters, fathers, uncles, grandparents, sisters, brothers, and family friends who have all been touched by autism. During this one day, we are all connected. Each year so many kids are getting better. Their stories will melt your heart and restore your faith in miracles!
A family of four can spend a fun day eating and playing for less than the price of one ticket to a major theme park. Scholarships for families in need are also available.
For those of you already registered – I can’t wait to see you there! If you haven’t – what are you waiting for! For more info and registration: http://www.tacanow.org/event-list/taca-family-picnic-oc-13/. Hope to see you there on June 2nd!
For more information:
TACA Family Picnic Info page: http://www.tacanow.org/event-list/taca-family-picnic-oc-13/
Here is a short video about our TACA Picnic: http://www.youtube.com/watch?v=V7rdY63FUFA
By Lisa Ackerman
If it’s your snack time or you are bothered by a conversation about bowel movements, this blog is not for you. If you have a child living with autism – welcome to the most discussed topic (no matter what, try to enjoy your food!!)
A new study supports what thousands of parents have reported numerous times. Here is an excerpt of the findings:
Scientists say the finding shows the essential role gut bacteria plays in the development of normal social behavior and they point out that gut problems are common in people with autism, a disorder characterized by alterations in social behavior.
Professor Ted Dinan, professor of psychiatry and a principal investigator in the Alimentary Pharmabiotic Centre (APC) at UCC, said they had been studying the influence of gut bacteria on the brain for years and they had already established that the serotonin system, which plays a role in regulating mood, “doesn’t develop properly if you don’t have enough bacteria in the gut”.
In 2012, TACA provided over 15,000 incidences of support to families living with autism. The number one support question and besides autism is about gastrointestinal issues. Parents can read more about the signs, symptoms, testing and treatments available (2).
You may think that I am obsessed with poop. You’d be right. I’ll say it again: Almost all roads related to autism lead to it. Ok, call me a “poop peeper.”
I am grateful for the American Academy of Pediatrics in recognizing the importance of gastrointestinal issues plaguing many that are diagnosed with autism. Their findings were released in 2010. Their study and consensus report (3) is driving more treatment for individuals suffering with issues that can be effectively treated.
In less than 2 years, we have covered key gastrointestinal and autism research on this blog:
As parents, we often wonder: Does the window close? Is it too late? The answer is never (4). Parents can investigate and start treatments today.
Now if you pardon me, I am going to see if Talk about curing BAD POOP is available as a trademark.
On a serious note, we are glad the science speaks for itself.
By Lisa Ackerman
As the family walked away I heard Kenny say “She must really like kids.”
He’s right, I do. If I am at a conference, gathering or event and there are kids around, you can find me interacting with the kids. I like hanging out, chatting and playing with them. You could say that I am just a big kid!
This was a family of six – four adorable boys and two parents who had stopped by to say hi at an autism conference. One of the boys has autism. I spent most of my time laughing it up with all four boys.
I remember many moments seeing kids at TACA events. At one family event, I leaned over to say to say hi to a pre-verbal 10 year old girl. She grabbed my hair and pulled me closer. Yes, my head was hurting and my first instinct was to pull away fast, but I tried to resist the urge. As I was less than two inches from her face, I whispered to her “You must really like hair. You have my hair pretty tight in your hands. Could you please let go?” She immediately let go and smiled. I leaned back down in the same close proximity to her face as before, smiled back, and told her I was glad to see her.
A lot of the friends I meet and hang with have autism. I know a lot about my friends. They don’t always do what you expect. Even as a parent of a child with autism, there are many behaviors that can still surprise me.
Some of my friends have remarkable characteristics and behaviors. I share these with you in case you read this blog and are unaware of this type of information. The uniqueness of each individual with autism is just that – unique.
Here is a sampling of the different characteristics in autism that I have witnessed over the years:
- They have no sense of danger.
- They do not respond to their name being called.
- They run from strangers – even strangers who are trying to help.
- They are afraid of loud sounds or bright lights – like police cars.
- They really like to play in water – many are not water-safe and cannot swim.
- If they have an idea, they want to get on with it right away.
- Many can open almost any lock. They can also escape from almost any enclosed space. They seem more equipped than Harry Houdini in their ability to escape just about any situation.
- They live in a persistent fight versus flight mode. It’s very hard to predict what they will do next.
This list does not apply to all individuals living with autism, but for some families this list can be a very real part of their lives.
At one point in time, my son had all these issues. There were several times I lost track of him. My heart exploded out of my chest during the brief times before he was found safe. Seconds felt like hours.
I recall one instance when I pulled him out of his car seat and accidentally dropped my keys. In the seconds it took to reach down to grab the keys, my son began running through the crowded parking lot. I took off after him. I already had tears streaming down my face as I was screaming his name asking him to stop. He did not respond to my commands. As I grabbed the scruff of his shirt, he had been milliseconds away from being hit by a car speeding through the parking lot. You see, he had just wanted to get into the store we talked about to do the thing I had already forgotten about. All I could remember was that he had been just moments away from a serious accident. He had no idea of my state of panic. This entire episode had lasted less than 60 seconds. Seconds that could have changed our lives forever. There are thousands of stories like mine.
I just recently talked to a mom about her teenager (with the mental capacity of a 4 year old) who had wandered away while getting her purse to get in the car. She wanted to go buy the pizza he had earned as a reward for his week of hard work. Within minutes, her son was found about to walk onto a major freeway; seconds again before another tragedy. There are dozens of these close call stories every month reported to TACA.
There are millions of kids like this living in the United States. They have a diagnosis of autism. Some of these kids accidentally wander away from their parents. Parents turn away for just seconds to do something, like quickly use the restroom while someone else is keeping an eye on the kid, and suddenly the kid is gone.
Many of these children can have the cognitive functioning of a toddler but the size of a child that should 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. Many of the kids that wander cannot speak which makes finding them even more difficult. Many are scared of the bright lights, sounds and commotion around them. They are afraid of the sounds and people there to help them.
This past week, three kids diagnosed with autism lost their lives. Mikaela (2), Owen (3) and Drew (4) wandered from their families and died. These sweet angels went towards water. They drowned before they could be saved. I cannot imagine how these families feel after losing a beautiful child who had no concept of safety.
My heart aches when I read a news story of a child who has gone missing. Since Mikaela, Owen and Drew died, two more kids have wandered, but were thankfully found before another tragedy occurred.
We need an Amber Alert system for situations involving children with special needs who wander. We need to gather authorities and in most cases, head for local bodies of water. As parents of children with autism, we know that we should always look at any nearby areas with water FIRST.
What can parents of children with autism do? Our incredible friends at the National Autism Association have done a wonderful job telling families what can be done. Here is a summary:
- Parent tag system: When you have a child with autism, play parent “tag.” If a parent or adult is on alert they are “tagged” and now on duty to watch and keep the child safe. While being “tagged”, they should not leave or take their eyes off that child, not even for a second. They are on duty to watch and observe the child at all times. If they need a break they need to “tag” the next adult for their turn to be on watch. At every family event or function someone needs to be the “tagged” adult.
- Secure the home: Security for families living with autism is key. Door locks and alarms are must. Families living with autism can request the Big Red Safety Box from the National Autism Association.
- Leaving your home: If you go on vacation, it is important to use the same approaches you do at home. Bring similar locks and alarms with you.
In one week, Mikaela, Owen and Drew were lost in what appears to have been in a “blink of an eye”. In the news, we have seen an average of 3 children with autism wander each month. 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 have this huge fear in the back of their heads 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 in hopes that someday our kids will understand safety and not need to be closely guarded. As parents, we have to do something to keep our babies safe. Our communities must understand we are loving parents living under extraordinary circumstances. It takes a village to protect these children. They shouldn’t face tragic circumstances. They deserve to reach their full potential.
1) Autism Safety Box from National Autism Association: www.autismsafety.org
Editors note: I could not locate a picture of Drew Howell. If we locate one, we will share.
By Lisa Ackerman
This past weekend, we had our 11th annual Real Help Now Conference in Costa Mesa, California (1.) It was a great event to educate and empower TACA families. I always love these events. My favorite part is always watching the parents as they leave; now ready to tackle their next steps to help their children.
In the question and answer period a dad, friend to my family, reminded me of the most important lesson in the autism journey: “Just because they don’t talk doesn’t mean they don’t have something to say”. This lesson deserves to be shared. It needs to be yelled from the mountain tops!
Just in case you have not heard it before, here is my story: My son Jeff was typically developing until 15 months of age. He had almost 20 words and had met all the milestones in the baby books. Then, it all literally changed overnight. He regressed, lost all his words, got very sick, and was diagnosed with autism. This was the most frightening time of my life; I could only imagine how my son felt.
My son was being sucked into the world of autism. He was self-stimulatory, had no way to communicate and everything was exasperated by a myriad of complex medical issues.
During those scary times, Jeff was absent from our world. He was lost somewhere else while sitting in the room with us. I did not know what he understood or thought. I certainly didn’t think he understood my words.
After years of therapeutic treatments and medical intervention unique to his needs, he has come back to us. He attends a typical education placement and is now a freshman in high school with a current GPA of 3.7! He still needs help in several areas, but we always raise the bar every year, and look forward to what he will be able to accomplish next. He has friends and has made enormous progress, but that is not the important lesson.
The lesson: During those tough times, Jeff was taking EVERYTHING IN. He heard what I said, he remembers the detail. He can now talk about the time “when he couldn’t talk.” He shares descriptions of, places and events that happened back then. His recall is impressive.
There are times when I have not been proud of my behavior and my words and wish I could take some things back. In my frustration, there were times I spoke about Jeff like he wasn’t in the room. He was. I now know he heard everything I said.. and understood.
This is a reminder to all parents of children with autism that lack communication skills: They do hear you and they do understand. They know what is happening, and as this dad reminded me, they are probably just are as scared as you are.
Please take this message to heart.
A few important tips:
- Talk to your kids with autism just like you would talk to any child, but keep it simple. Let them know where you are going, what you are doing and WHY you are doing it.
- Spend time with your child outside of therapy hugging them, telling them you love them and why you are fighting so hard. They will hear you.
- Please (and I am begging) do not talk about your kids while they are there in front of you. If you are at appointments (doctor or therapist) have a babysitter attend to your child in a separate room when you get to any details that may hurt their feelings. Don’t share negative emotions and thoughts with others when your child is present in the same room.
- Tell teachers and staff that work with your kids to do the same! Never talk negatively about any of the kids while they are there listening as well.
Individuals with autism can often have broken “outputs”. Their input system, in reference to what they hear, witness, and see is often intact. Usually what can be broken (and repaired) is their output system – their ability to communicate. Even with broken outputs, devices like the iPad can be hugely helpful in giving them a voice until they find their own (2.) This is one of many assistive technology solutions that can help individuals with autism find a way to communicate.
Your children are partners in the autism journey. Console them. Involve them. Share with them.
Thank you for reading this blog. Please share it with other parents. Our children are miracles. You must let them know you are working hard to help them be the best they can be. Always remind them of how much you love and believe in them. They can hear you.
1) Real Help Now Conference www.realhelpnowconference.com
2) iPads and Autism – Innovation in Communication http://www.tacanow.org/news/ipads-and-autism-communication/
The TACA Tribe…
By Lisa Ackerman
Note: this blog posted in August 2011 it’s my favorite “super mom” story. In honor of Mother’s Day I wanted to re-share and thank my TACA friends for all the hard work they do for their kids. I’m proud of you. Happy Mothers Day to you.
Early in my autism journey I found a story – a bit of folklore that describes many TACA families. I know that tribal folklore always has a message meant to inspire and active the human soul. This is my favorite:
Two tribes lived side by side. They were separated by a mountain and a valley. The two tribes deeply believed in the spirits protecting their tribes and believed they were forbidden to cross the imaginary lines separating their tribes.
Because of their fear of the spirits in charge, valley tribe members never went up the mountain and mountain tribe members never walked to the valley. To violate this rule was unthinkable.
One night, a valley tribe baby escaped from the safety of his tent and crawled up the mountain. The valley tribe members were distraught and frantic looking for the child. They scoured the valley for the lost child but it never occurred to them to venture up the mountain in their search. They could not cross the forbidden line.
Giving up, the valley tribe members began to commiserate the loss of the child. The baby’s mother however, walked past the wailing tribe, climbed up the mountain, and recovered her child.
On the way back to the village a tribe member asked the mother “Your baby was gone forever and you brought him back!! How were you brave enough to go search the mountains when you know it is forbidden? I could never do that!”
The mother simply replied “It wasn’t your baby.”
Nothing encapsulates the autism journey better than this centuries-old tale. This beautiful story describes how a family will fight every day to bring their child back.
I marvel at the families that fight. I consider mine one of these families – out to do the best job we can do. My motivation for the job varies though. On some days, I want to hide under a rock and daydream about what my life would be if I waved my magic fairy wand and my child was autism-free. Luckily, most days I have the courage to storm the mountain like the valley mother in the story, and recover my child from the challenges of that day.
Today I am fighting not only to bring Jeff back to the tribe. I am fighting for your child too.
Please honor a super mom here in the comments and thank her for being part of your tribe
By Lisa Ackerman
At TACA, during the long hours some pretty funny things occasionally happen. Monday was definitely one of those fun days.
In April I wrote a blog called “No Soup for You” after the famous lines uttered by the iconic Soup Nazi from Seinfeld (1.) The goal of the blog was to give a window in on a 13 year journey of dietary intervention. For some new families, they have no idea how long this diet last, does it look the same year after year and does it get easier on families?
As it turns out there are folks out there that read the TACAnowblog that are not living the autism journey like many TACA families. Some readers are connected in a different way.
A friend forwarded my blog to Larry Thomas. Larry is the one and only Soup Nazi. We were featured together for a big surprise on the great daily autism show Autism Live (2.)
Check out the video:
Special thanks to Shannon Penrod and the folks at Autism Live for setting up a fun experience. I will treasure the day and the signed Soup Nazi ladle. That was a great time.
By Lisa Ackerman
Many families living with autism are FRUSTRATED that not much is seemingly being done to help the autism cause. As a parent, I am in agreement. After being on this journey for almost 14 years, it’s sad to see the lack of progress made in this area. There just seems to be more people affected, fewer resources to offer help, and no end in sight.
You may have thought, if autism affects 1 in every 50 kids (1.) that means there would have to be a lot of celebrities, congressional representatives or other well known, high-profile figures that have kids with autism. Your assumption is correct. There are a lot of famous people with kids affected by autism. I know, as I have met some of them. They are parents like you and me who have needed to reach out to us for help as well.
I have always wondered – why don’t celebrities and famous people help? The answer is complex.
Issues that affect children can be extremely challenging. Your job as a parent is to protect and help your child be the best they can be. When your child has a disability, it doesn’t matter WHO you are – the process can be debilitating. Add this emotion with also being constantly viewed under a “microscope”. People who have a high profile are subject to a lot of attention. It is the nature of their “job.” Many kids born to celebrities don’t ask for this attention. Such attention could really lend itself to children being a victim of horrific assaults in the media or worse. I understand why people who are famous don’t want to be involved. Their child needs to be protected.
Most parents of children with autism are not famous; they don’t have cameras in their faces wherever they go. They live their lives without fame (or money!!)
Our famous, high-profile friends often live in a fish bowl. People can see everything they do – even things they don’t want to disclose.
When a celebrity steps out to help a cause, it is a pretty fantastic thing. We have many famous friends who have helped TACA. It is equally fantastic when someone also wants to help without even having a child affected by autism. We really appreciate everyone’s efforts to assist in creating more awareness.
When you meet or read about high-profile people who have a child with autism, don’t judge them for their effort (or in your opinion, their lack of effort). Their journey is completely different.
Autism is the least funded disability in America affecting the most children. I hope someday, more brave souls step forward to help. Instead of chiding these celebrities, let’s coax them into action that will make a big difference for families and individuals living with autism.