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.
By Melanie Sanchez – TACA Mom
My son Andrew is 15 1/2 years old. He is non verbal, has autism, and a lovely contagious smile. He had a brief “sleep deprived” EEG done right after diagnosis when he was around 3 years old. It lasted less than an hour and hardly seemed worth the time and effort. At the time of the first EEG, he fought the sedation for 4 hours. It seemed like another worthless test in a sea of worthless tests. No doctor had ever suggested a follow up EEG.
Fast forward 12 years, he had an EEG done with a caring staff revealing seizure activity all day, all night and in every area of his brain. He has probably been experiencing it for a long time as he cannot sleep and his symptoms have not been as responsive to other treatments as we had hoped. My heart aches that a proper 24 hour EEG was never suggested by his doctors. I am leaving those feelings behind because I am hopeful that during this 15th year of life I will hear his voice. I am hopeful that he will finally be able to sleep, show me his strengths and his true potential. Since his diagnosis, I have continued to look for answers for my beautiful son. I share our story to inspire others into seeking treatment and to demonstrate that hope is ALIVE and well at my house!
By Gabriella True – TACA Co-Coordinator Connecticut
I have twin boys who will be 11 years old this summer and one of them has autism. Although Timmy was diagnosed with autism just prior to his third birthday, he’s been in therapy since the second day of his life. His twin brother, Xander, and the rest of our family haven’t really known a day in which Timmy and the whole family wasn’t affected by autism. Having twins, one with autism and one basically neuro-typical means we really see a stark contrast between the two worlds. This story is not about the one with autism as much as it’s about the one without because autism affects the whole family.
Over the last 11 years, we have learned a lot about autism: it’s co-morbid health issues, how to deal with the school system, traditional therapy, etc. It is not always easy to juggle the differing needs of both boys because we want to make sure that Timmy’s autism doesn’t stop Xander from doing the things he needs and wants to do. In this journey, I think it’s one of the things that together as a family, we have done a pretty good job at. We continually talk with Xander about Timmy’s challenges, setbacks and victories. We do our best to keep an open door to Xander so that he can tell us how hard Timmy’s autism is on him, how unfair it is that we can’t do certain things, how he hears mean comments from strangers, how much he worries about the future after we aren’t here to take care of Timmy, etc. These are all really heavy topics for a kid to be dealing with. But even with these complicated feelings, he is quick to point out the great things Timmy does. We are so lucky he is happy and healthy.
Xander has played such an active role in his brother’s life that much of the advice he gives to my husband and I has proven to be invaluable. As with most families, securing appropriate services through the school district is always a stressful challenge. So this year, as I was pulling together data and progress reports for an upcoming IEP meeting, I decided to ask for help from the expert on Timmy, Xander. I asked him to write down 10 goals he thought the school district should work on with on his brother this year. And of course in 10-year-old fashion, he chose to scrawl them down on little pieces of paper. While pretending that he wasn’t taking it seriously, he wrote down 9 goals and then handed them back to me with pride. I read through them with amazement, as he had completely understood the challenge. So the next day at the IEP meeting I had Xander’s little notes with me. Sometimes I do a family statement. These notes were all the family statement needed this year. The boys go to the same elementary school, so the staff is familiar with Xander and Timmy’s relationship. The teachers and staff have done a great job. They know what Timmy is capable of now and what else is needed to help him be successful in other areas. As we went through the proposed goals, we became aware of how many coincided with Xander’s suggested goals. By the end of the meeting, every single one of Xander’s goals was included in some shape or form into the IEP documents.
During dinner that night, we talked about the IEP meeting and how Xander was pretty accurate in knowing Timmy’s needs. I asked him if he would write down his thoughts about these goals and his relationship with Timmy. He said: “Well I am his twin so why wouldn’t I know everything about him? I’ve known him since before we were born. I look at my life and my friends and easily see what Timmy can and can’t do like us. It’s obvious what he needs help on. Like who wouldn’t get that he needs help being a neater eater? Or that he has to learn how to be safe and not run away from his aide? Mom, what would you have done if the school said no to these things? You would have to get the lady who helps you with those meetings to come back to the meetings, right? (Meaning our advocate) Well, I’m glad they know what he needs but I’ll check in at the school and make sure they are doing it right. The other boys always tell me what he is doing in his classroom. We are at Timmy’s spies.”
Autism is hard and it makes everyday a challenge. But having an open dialogue with the family about how it affects not only the child with autism but the whole family is key. Through TACA, I have had the honor of meeting so many families and siblings. I cannot sing enough praises of these siblings. Of course, they do not need an Autism Awareness month for themselves because they live and teach it every single day. They are some of the greatest autism advocates we could ever imagine and hope for. They teach the world about understanding differences and how autism is really hard. They teach the world how to celebrate victories and to celebrate the person with Autism. They are real Autism Super Heroes.
By Lea Googe – TACA Co-coordinator Texas
We often look back and wonder just how Oliver got so sick. We have our suspicions. And we have our regrets. Our family has a combined medical history filled with autoimmune issues like diabetes, ALS, chronic fatigue, fibromyalgia, Psoriasis, Rheumatic Fever, Rheumatoid arthritis, allergies, asthma, ADD, depression and anxiety. These are all important when you’re looking for possible Autism triggers. But before Oliver was born, we had no idea that these could be warning signs. Our doctors never asked us about any of these issues while we were pregnant. Nonetheless, we were concerned about our baby’s chances of autism, even if at the time, we were unsure exactly why.
Originally, we were told we were having a girl. And knowing that girls have a much smaller chance of autism gave us a bit of relief. We decided to name her Zoe. Turns out, our OB was really bad at reading ultrasounds. And just like that, Zoe became Oliver.
Our pregnancy lasted the normal length of time. During this span, we were given folic acid in our prenatal because our OB was concerned with spinal bifida. On top of that, he had an ultra sound machine. We used that thing more that 10 times because we were so excited to see pictures of our baby. Meanwhile, we ate loads of GMOs and pursued a multi-vial flu shot that still contained mercury. Finally after 40 weeks of this, Oliver was born in an emergency c-section. He was different from birth.
We didn’t fare much better with our new pediatrician, either. In one of our initial appointments, we asked her about autism. She assured us that her best friend was an autism specialist and vaccines were not the cause. After his first vaccinations at eight weeks, Oliver developed a huge golf ball sized knot on his leg where the injection was given. Concerned, we called the doctor. They told us it was normal. “Just give him Tylenol.” Suspiciously, nothing was noted in his record file.
From the very beginning, Oliver rarely slept. For the first five months of his life, he would only sleep in his baby swing, and only if it was swinging. He was a picky eater, exclusively breast fed as he did not like bottles. After trying to feed Oliver yogurt, we discovered that he was allergic to dairy, causing him to break out in puffy red rashes. Oliver also had constant gas. Any strain he made, would push out an uncomfortable release. When we took him in for well checks, we would ask if having so much gas was normal. They would tell us no, but offered no reasoning as to why it was happening and provided no suggestions for dealing with it.
Oliver rolled 20 feet at four months and walked at nine months. It was at nine months where he fell off the charts for communication milestones as he did not wave and did not understand what we were saying. At 12 months, he had his first MMR vaccine and grew even more distant. At that appointment, our new pediatrician did suggest we start feeding therapy since he was not eating solid foods. We saw that pediatrician one last time for his only flu shot in the fall.
In the beginning of 2010, we started taking Oliver to a new pediatrician and also began Early Childhood Intervention services of Occupational Therapy and Speech. Oliver did not enjoy these home therapies, but we did have an amazing group of therapists who were full of helpful information. Looking back, I wish someone would have told us to start seeing a specialized M.A.P.S. Doctor as pediatricians are not trained in medical school on the co-morbid conditions that are associated with autism.
After that, we found another pediatrician that ran stool and urine testing on Oliver. Through this, we found a lot of oxidative stress and yeast markers in his gastrointestinal system. Our new pediatrician confirmed that our child’s immune system was not functioning normally. She advised us to “wait” on any future immunizations.
We were trying to make a difference for our son, but still not making real progress. At this point in his life, Oliver pretty much only ate Cherrios, Chick-fil-A chicken salad and saltine crackers. We were still in feeding therapy but having little success.
It was around this time that my sister’s friend at work gave her a TACA Journey Guide for us. It was one of the best gifts we’ve ever received. This was a game changer for us. It guides families through the treatments for autism. We got connected to other TACA families. We went to conferences, watched educational webinars, researched symptoms, and had medical testing which led us to treatment. It has given us insights. It has given us contacts. It has given us options. It has given us a chance. This is why we volunteer for TACA. More families need to know that Autism is treatable. There is a network of people just like you that want to help.
Today Oliver is the #1 kid in his feeding program. He loves hummus, organic chicken salad, GF/CF cookies, GF/CF pasta and still works hard to increase his healthy food intake. He is so connected and social with adults, which happened when we removed the allergens from his diet like eggs, gluten and dairy. We are still working hard on peer play and language.
This year, Oliver has many word approximations and his receptive language is growing. We are still working on his gut & immune issues and he is still not a great sleeper, but he has improved leaps and bounds. He is our superhero for working so hard. He deserves to feel better, understand and process his surroundings. We celebrate him everyday, not the autism he suffers from. There is a strong, beautiful light inside him. We just need to reach it, so he can shine. TACA gives families like ours so much hope.
Author biography: Joey, Lea and Oliver live in the Dallas-Ft. Worth area. Joey is a writer and Lea is a parent volunteer for the local TACA Texas chapter. Together they work hard on recovering Oliver and helping families find the resources that TACA provides.
I was recently reading a post on Education.com. It was titled “Do Kids Need Friends?” The introduction really tore at my heart. It said:
“Human beings are social beings. Responsiveness is built in; we come into the world programmed to respond and relate to others. Even infants turn their heads in response to the sound of a human voice. Early in life children begin to interact with children outside the family – in child care settings, play groups, and preschool programs. The friendships children have with each other are different than those they have with parents and relatives. Family relationships provide an ease, a closeness, a deep sense of intimacy. But they don’t substitute for other relationships. Starting young and continuing through adulthood, friendships are among the most important activities of life.”
I have a 9 year old with Autism who also struggles with Apraxia. I think we all know what Autism is by now, http://www.tacanow.org/about-autism/ , but many of you may not know what Apraxia is. This a great website where you can find out more: http://www.asha.org/public/speech/disorders/ChildhoodApraxia/. You see, it’s a real double whammy for trying to make friends. We are incredibly blessed that he has a device to communicate with, however, many kids still don’t know quite how to react to that and that moment where a connection could happen is lost. He will try to compensate by handing a child a ball or try and grab their hand, but when you are 9 and you do that kids think you are “weird” and begin to avoid you on the playground. This avoidance fills his beautiful blue eyes up with tears, as he desperately wants to connect and make friends. If I hover around him kids his age think it is strange and will avoid him even more. Some will begin to talk to him like he is a baby. When this happens my heart sinks right alongside his. This is the first year that I can tell by the look in his eyes that he knows kids see him as weird or different. His sisters used to provide a great buffer, however, they are teenagers now and it is rare that they come to the park with us anymore. And truth be told, he doesn’t really want a therapist, sister, cousin or parent following him around anymore.
He wants to do things by himself.
He wants a friend.
He wants someone ringing the doorbell asking him to play.
He wants and longs for this important activity of life.
I want this for him too.
I am hopeful kids like yours will give him a chance.
I will teach him and support him.
I won’t give up until he has a friend.
…Or maybe 10
-Cormac’s forever hopeful Mom…
To see Cormac’s video http://ff.tacanow.org/vanessa-surprise
For families with typical children you can help your child be an #AutismSuperHero. Here are some great tips on how to be a friend to Cormac and the hundreds of thousands of his friends http://tacanowblog.com/2014/03/17/being-a-friend-to-someone-with-special-needs/
Excuse me I need to go ring someone’s door bell <3
By Holly Riley TACA Co-coordinator Los Angeles/San Fernando Valley
In May of 2005 at the age of two, my son, Quinn, was diagnosed with autism. We didn’t know if he would ever speak. For that matter, we didn’t know if he would ever do anything but tantrum, cover his ears and spin things in the corner. Those were dark days. There is nothing glamorous or good about watching your child suffer. While we celebrated Quinn and his accomplishments, we never celebrated autism. We worked very hard to help him get better.
See Quinn at diagnosis in this short video https://www.youtube.com/watch?v=yWL_MpiOxgg
Flash forward to 2011:
After thousands of hours of therapy and dozens of medical interventions, Quinn was in Washington, D.C. The good doctors at the National Institutes of Health were studying him because he was so special (1.) They confirmed something we had dared to dream about: he no longer met the criteria for the autism diagnosis. But while they were at it, they discovered his epilepsy in an overnight EEG. He was having almost constant spikes of epileptic activity both awake and asleep (read about seizures reference 2.)
So we pressed on with medical interventions. Along with the epilepsy, Quinn was suffering from anxiety due to an autoimmune response to a bacterial infection. We worked with his doctors and used various treatments to calm the immune and neurological systems. After years of failed anti-epileptic medications and multiple abnormal EEGs, our neurologist agreed that we should wean him off of the medication and get a new baseline EEG.
Flash forward to 2015:
Quinn had his first-ever clean EEG. There were no spikes of epileptic activity and no seizures – all normal for 24 hours, and all without any anti-epileptic medications.
Expectations & Quinn’s Superpower
Let me tell you, when people hear the word autism, they tend to have expectations. They see Quinn, who looks so normal, but they know he’s not, and they want to know-What’s his superpower? Really, nobody literally asks the question, “What’s his superpower?” Instead we get math and science games as gifts from family members. We get recommendations for technical institutes from other parents. Professionals ask if he’s musical (they actually mean, is he a musical prodigy?).
The truth is, those science and math games often go unopened and get donated to charity after they collect some dust. They just don’t interest him – he’s too busy playing with his action figures and video games. He’s barely turning 12, so we’re really focused on middle school right now, not college. And, while he is musical, the only instrument he plays regularly is his iPad.
There are a lot of things he can’t do.
He can’t tell you what day of the week it was or will be on a random date. He can’t count hundreds of items in one glance or draw an entire city after seeing it just once. He can’t do big sums in his head. To be blunt, he doesn’t have any cool party tricks. He’s pretty much like most twelve year old boys. He has a great memory for topics that interest him, he’s shy around pretty girls, and he’d rather watch YouTube videos or play with friends than go to school.
But I know you still don’t believe me and only kept reading to find out what Quinn’s superpower actually is, so I will tell you. Recovery. Quinn has recovered from autism and epilepsy.
I can’t imagine a party trick that could top that.
Quinn is my Autism Superhero.
Want even more Quinn? http://ff.tacanow.org/holly-ford-riley
By Lisa Ann Pitts – TACA co-coordinator Virgina
After 6 months of grueling training, my boy Aidan can now open doors for people. He holds them open after entering and he’s very aware of people walking towards doors. Sounds like a little task, but the concept was tough for our boy because he has autism. He sometimes stands there at school and just lets a stream of traffic file through the front door and I’m filled with pride. He also notices when anyone is missing from class, whether it’s a teacher, an aide or a student. He cares that much. He asks why they aren’t there, if they’re okay and when they’ll return. Aidan loves pop music, but he’s especially a big fan of One Direction and the song, Story of my Life because he’s drawn to emotions. He feels them strongly and he responds strongly. You say to yourself, doesn’t sound like Autism?
He loves intensely and he feels intensely. He’s an amazing gift to anyone who is lucky enough to know him. Right now, he struggles with epilepsy. We count the non-seizure days like a kid counts the days till Christmas. Every day that’s seizure free is a good day. He eats a pretty strict diet intended to help prevent more seizures, because Aidan has the most difficult to treat. We’ve been told that meds could help or make him worse. So we do everything we can to keep him safe and seizure free. We have monitors upstairs and downstairs so he can have much needed time alone. After all, he is a teenager.
We focus on the victories and he’s generous to give us plenty to celebrate. We are counting on 2015 to be the year of the totally independent shower. We have hope.
Want more of this story? http://ff.tacanow.org/lisa-ann-pitts
How to help during #AutismActionMonth http://www.tacanow.org/ways-to-help/autism-awareness/