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.
By Jackie Moore – TACA Georgia
Every autism journey is different. This is our family’s journey with autism. Thirteen years ago, I gave birth to my daughter, Jordyn. At that time, I knew very little about autism. If you would have asked me what I knew, I think my response would have been something like “Isn’t that what Rainman had?”
When Jordyn was 24 months old, that changed. I heard the most difficult words I’ve ever heard in my life, “I think your child may have autism.” I remember the day like it was yesterday and I can honestly say I’ve never felt that kind of hurt in my life. Ben and I cried for a day and then got busy. You name it, we tried it! By 26 months, Jordyn was doing 40 hours of ABA therapy a week, speech therapy, the gluten/casein free diet and many, many more things. We were seeing gains in several areas, but we still weren’t getting language. Language was what I wanted more than anything! So, when Jordyn was almost 5, she and I moved from Missouri to North Carolina for a year so she could attend a private school specifically for children with autism. Our hope was that she would learn to talk. Ben stayed in Missouri due to his job and flew to North Carolina each weekend. To say it was a difficult year would be a huge understatement. During that year, Jordyn began having medical problems. She started having extreme anxiety to the point of panic attacks. Nothing we did would calm her and she would go days without sleeping. She looked terrified 24 hours a day. I wanted to give up, but giving up wasn’t an option.
We moved to Atlanta a year later and kept searching for answers. Accepting “that’s just autism” as a reason for her pain, anxiety and panic attacks was not an option I was willing to accept. As we continued figuring out the medical problems behind the autism, she started improving. The look of panic on her face started turning to a look of content. At that point, I realized a happy child was my ultimate goal and we were achieving it.
Autism is not a blessing and it’s not simply “thinking differently”, at least not in our house. It’s lack of speech, difficulty with social skills, academic delays, food allergies, gastrointestinal issues, eczema, seizures (although thank God so far this is not one we have faced) and the list could go on and on. Jordyn is a blessing, autism is not.
Jordyn is now 14 years old and while she still has many challenges she has come so far. She once had a look of panic 24 hours a day and she now has a smile. She was silent until the age of 7 and she now has words. Her speech is not close to that of a typical 14 year old but she is able to talk. That alone feels like a miracle to me that I will always treasure! Jordyn now says the words I waited so long to hear… “I love you.”
Watching Jordyn struggle with the challenges autism brings has been the most painful experience I’ve ever faced. I admire her strength, determination and attitude towards life even on her most difficult days. Jordyn is a superhero in every way!
See a video about this #autismsuperhero
By Simran Garcia-TACA Orange County
Akshay is a fun loving, hard working, 13 year old eating machine. When Akshay was 4 yrs old, he was diagnosed with autism. The odd thing is we were really going to the neurologist’s office to talk about seizures. I guess that’s what happens when you have to wait almost four months for the appointment and the researching takes over. Our life since then has been a balancing act of the two.
A week after Akshay’s 4th birthday he had his first ever seizure. My husband Eddie and I had no idea at this point that Akshay had regressed into autism. We didn’t have a name for the chaos in our lives at the time. Akshay just had these meltdowns, got aggressive and at times he was absolutely inconsolable. On this day in March of 2006 he was having such a moment. His issue was me attempting to put his jacket on and Akshay wanted no part of it. He was jumping up and down on my bed, crying, screaming while I was frantically holding one arm to keep him in place. All of a sudden, he attempted to pull away and boom, he collapsed in a heap. I freaked out!!! I yelled at my husband to call 911, shook Akshay and called his name. Akshay was limp, almost lifeless, his skin color was pale and his lips tinged blue. Finally, after what seems like forever (which was actually probably 15 seconds), he came back and the after effects of what had just happened was very apparent. My very active, very hyper, always moving child was now motionless. He didn’t even want to pick up his head and barely responded to us when talking to him. I called our pediatrician’s office to tell them what had happened. The nurse who answered told me casually,”Oh it sounds like he had a seizure, you should probably come in.” Yeah, you think?!!! He wasn’t capable of moving, so Eddie carried him downstairs to the car while I maneuvered his younger sister as we rushed off to the doctor’s. Our doctor was pretty surprised how quiet Akshay was. After 45 minutes, he finally returned to the Akshay we knew. An EEG was ordered and a referral to the local Children’s Hospital was made.
When our approval to see the neurologist came in, I rushed to call and was thinking they would see us ASAP. ‘Cause really, a four year old collapsing was serious, right? Apparently, at the neurologist’s office it was clearly not serious. It was now April 1st, and I was told we would not be seeing the doctor until early July, which is why I thought he must have been fooling me. Sadly, it was not an April Fool’s joke and Akshay really did not have an appointment until July 2. So we were told to sit tight, go do our 20 minute EEG and wait to see the neurologist in July.
When you have almost four months to sit, worry, and wonder what is going on with your child, you find yourself spending a lot of time on the computer. Every time I would put in research for seizures, autism kept popping up in all the results. Hmmmm. The more I read about autism the more I was starting to consider that all this chaos in my home with Akshay had a root cause, autism. So finally on July 2, 2006 when we walked into the neurologist’s office, the doctor said to me,” So I see we are here to talk about seizures.” I promptly answered, “No, I think we need to talk about autism, because I think my son has autism.” I’ll never forget the confused look on the doctor’s face as she asked why. I proceeded to list off all the signs of autism and the issues that we were experiencing at home with our son. From him only having 5 words, to the bouts of severe aggression, tantrums, lining up of toys, not looking at us and the list went on and on. I told her I’d be happy to talk about seizures after, but we had to talk about the possibility of autism first. After ninety minutes in the appointment, we walked out with a dual diagnosis of seizure disorder and autism.
Akshay’s life has been a delicate balancing act of treating his autism and epilepsy. When I try to explain his seizures, most people picture what they see on TV. The falling down, body flailing, foaming at the mouth, Hollywood stuff; it’s not what happens. It’s as simple as him blinking rapidly or just staring off, as if somebody hit the pause button on him for a few seconds. On the rare occasion Akshay has fallen down, he has become disoriented and wanted to fall asleep because those few seconds knocked every cell of energy he had in him. On the very rare occasion, it’s warranted a trip to the ER.
The main frustration of my son’s seizures are the countless medical professionals who discounted his seizing “autistic like” behavior. With Akshay’s limited verbal skills, he cannot tell people when he is not feeling well pre or post seizure. So his behavior afterwards of being agitated or angry is shrugged off as a typical autism symptom. In his nine years of Epilepsy and Autism, he has come to me exactly three times to say,” I feel funny”. Thankfully nearly three years ago, we found a neurology team who took my concerns seriously and his seizures have decreased greatly.
My worst mom moments are when I see the school name on my cell phone’s caller ID during the school day. My heart always sinks and I hold my breath as I answer the call. The calls are usually like this: ” Hi Mrs. Garcia? Akshay is okay but….” and the rest is filled in with the incident of a minor episode, he’s now resting at the nurse’s office and he’s recovering well. Sometimes the call is hurried with,” Mrs. Garcia you need to come over right away”, which means he’s had a major episode.
We have seen the most progress with Akshay in the last four years. We are extremely lucky that our neurologist and MAPS physician work closely together to keep him at his maximum health. It’s been a balance of treating his mitochondrial disorder and epilepsy as his brain and energy systems are fighting for dominance instead of working together. Akshay is in a fully mainstreamed general education classroom setting with an aide. The aide, in the last few years, has been more necessary for health reasons rather than his autism.
Never let a professional tell you it’s just “autistic” behavior in your child. Behavior is our children’s way to communicate to us. It’s not just because they have autism that they have behaviors, they just don’t feel well and are telling us so. This is exactly how Akshay can tell me he’s not okay. Get a 24hour EEG and find a neurologist that will listen to you. Also, a MAPS physician is crucial!
Are our lives perfect? No, but it’s much better now. When the school calls, I am a little bit more relaxed than I have ever been.