“Mom, what is Autism?”
This was the question I got from my 7-year-old daughter just recently. At that moment, I was more prepared to tell her where babies come from. My husband and I have always made it a point to talk about her brother’s challenges and answer all of her questions. She knows he has seizures. She knows he has diabetes. Medical stuff is easy to explain. Explaining her brother’s autism has been a little more difficult.
Her life began watching her brother in therapy. She was a newborn baby at the time when Early Intervention started. The relentless flow of ABA teachers, speech therapists, physical therapists and occupational therapists. When she was old enough to walk, she would stand at the baby gate while her brother was with his ABA teacher and protest (quite loudly) that she wanted to be at that little table doing exactly what he was doing. Even at 1 years old, she was protective and supportive of her brother. She learned sign language along with him and at 8 months old, she knew about 10 signs.
When it was time for her brother to go to preschool, she came with me for the 45 minute drive to the school especially for children with autism. At age 4, when she asked me why her brother doesn’t talk like everyone else’s brothers, we tried to explain it to her the best way we could so she could understand at her level. She told us it made her sad, but he would talk one day, she was sure of it. I told her that we were too. This was followed by a big hug and kiss and she seemed content with the answers. But kids are much more inquisitive and intuitive than we give them credit for sometimes. Since she turned 7 this past year, she’s become very wise in her young age and our simple answers just aren’t cutting it anymore.
“Mom, what is Autism?”
I could answer that question in a heartbeat if I’m talking to an adult. Vaccine damage. Encephalitis. Toxic overload. Yeast, bacteria, viruses all creating havoc in the body. Environmental toxins. Autoimmune dysfunction. Are these things I can tell a 7-year-old? How much will she understand? She knows he can’t talk because of the shots he got when he was a baby. She understands why we can’t go to the movies because it’s too loud for him. She’s okay with the fact that we have to leave the park if he has a meldown. Her entire life has revolved around Autism, the good and the bad.
So I asked her, “What do you think Autism is?” “I think it’s brain damage.” Me: “Why do you think that?” “Because when we go to the doctor (Neurologist) he talks about his brain all the time and that it doesn’t work right.” In her brother’s case, this is part of his autism diagnosis.
Seizures have had a profound effect on his neurologic development. On every vaccine insert listed as a possible side effect is seizures. That should give any parent a reason for concern. If you read the paper given to you by your pediatrician, this side effect is written in a very comforting way to lull you into a false sense of security. It states that having a seizure is very rare and there’s a good chance statistically that this will never happen to your child. But what if it does? This is taken directly from the CDC website regarding only febrile seizures:
“Although febrile seizures can be frightening for the child’s caregivers, MOST are harmless. The MAJORITY of children who have febrile seizures recover quickly and have no lasting effects.”
Let those 2 words sink in. Most. Majority. Why are we so willing as a society to play Russian Roulette with our children’s neurological development? I know there are people who will defend the vaccines and claim that they keep communicable diseases under control. I get that. Who wants their child to die from the measles? But you have to ask yourself the question–at what cost? What about the infants and children who are not lucky enough to be part of the MOST or MAJORITY group? Jenny McCarthy details in her book about her son going into cardiac arrest during a seizure. It’s maddening how these side effects are not taken more seriously. Would you be so willing to vaccinate your child if you knew it could potentially lead to seizures and possibly cardiac arrest? Why are pediatricians so angry when we as parents ask questions?
I can tell you from first hand experience, seeing your child turn blue while having a convulsion is more than “frightening.” It will bring you to your knees. It will change your life forever. It keeps me up at night, checking on my son every few hours. Looking back, my son had his first seizure at 9 months old, but at the time I didn’t know it was a seizure. He was crying in his crib, extremely pale and had thrown up. He slept so soundly for hours afterwards. I chalked it up to him having a virus and called the doctor who confirmed the same thing. What I didn’t know is that was the postictal phase after having a seizure. He had his first tonic-clonic seizure a few years later. Talking with the neurologist, it became apparent to me that my son was having absence seizures for a long time without me knowing these were actually seizures. My son’s lack of speech should have been the biggest factor in pursuing an EEG to determine if he was having seizures. My pediatrician never recommended it.
It’s estimated that epilepsy rates among those with autism range from 20 to 40 percent, with the highest rates among those most severely impaired by autism. I believe the number is much higher. I wouldn’t have known my son was actually having seizures had he not had a tonic-clonic seizure that was impossible to miss. The good news is that with proper treatment, many children are recovering skills that were lost and language that had disappeared, all due to undiagnosed seizures. I urge all parents to pursue an EEG if your child is diagnosed with autism, especially if they have speech delays. It could be a piece of the recovery puzzle for your child. For my son, we’ve seen more skills emerge as we achieve better seizure control. Seek out practitioners who understand the autism and seizure connection. I’m excited to go to Autism One this year and learn as much as I can from the presentations on seizure disorders.
My daughter asked me one last question, “Mom, can Autism be healed?” I told her that I think it can be and we’re gonna try really, really hard and never give up. If you reach for the stars and only make it halfway, you’re still halfway from where you started. No matter what level of healing we can achieve, it will certainly make a positive difference in her brother’s life.
For more information about seizures and autism here is a great link from our friends at TACA:
http://www.tacanow.org/family-resources/seizures/
~Savage
P.S. I wish everyone a wonderful Easter and Passover Holiday. God bless you and your families on this special day!
Thank you for this blog. My daughter has seizures and we have never gotten them under control. I completely understand what it’s like to check your child every couple of hours while sleeping. It wasn’t until I read Jenny McCarthy’s book, “Louder than Words”, that I realized we were dealing with more than epilepsy. After numerous EEG, MRI, PET, CAT scans, a muscle biopsy and at least a dozen anti-convulsants, Mito Specialist, Genetics Specialist, DAN practitioner and now homeopathy, we have made some progress but still do not have seizure control. I’m sure that my husband and I will suffer post traumatic stress disorder at some point, but for now, we search everyday for answers, are always waiting for test results (that keep coming back normal), and will never give up. I still believe that my daughter will have complete health restoration. I could most definitely relate to your blog. Thank you. GMT
I feel the same way about PTSD sometimes too. We have to keep fighting for answers.
Thank you for sharing!!!!Greetings from Mexico!!
I don’t remember my daughter ever asking what autism was- but we talked alot about how intelligent her big brother was and how she was also very smart and very lucky not to have the problems he does. She has always been his biggest supporter and was also the one who convinced me of the vaccine-toxic exposure/ autism link and has taught me a lot about autism. She works with Jiil James at UAMS and will finish her PHD in May and continue doing autism research. She is my hero.
Well written.
Thanks for taking time out to read it and follow the Thinking Moms 🙂
LOVE it. Our daughter has seizures also. We are dealing with some of those same questions with my 4 year old niece. She wants to know why our daughter has seizures and if she will start to have them too. She wants to know why she can’t talk like other kids and so far what I have told her is that she got very sick when she was a baby. I need to find a better way to explain it but I don’t want to scare her.
You’re right about seizures. No matter how many she has, every single one is terrifying,
Thank you for sharing your story 🙂 My son takes anti-epileptic medications and we use an array of natural supplements as well that help us with seizure control. Our neurologist has been terrific in working with us on this. He was the third one we went to and really sees my son as an individual and not just a child with autism.
Hi, Just wanted to introduce myself as I’m stalking your blog (lol), learning about autism. I’m finishing my degree to become a naturopath, and once practicing, want to help kids with autism. My son (who is now 6) suffered a severe vaccine reaction when he was 8weeks old, and although he had issues for a few years after it (like fits), he is well and robust these days generally (apart from low muscle tone effecting his writing & some OCD behaviours). But this close call made me research vaccines, like all of you have too, leading me to natural medicine. So as I might be popping up on some posts to ask questions etc I thought I’d introduce myself 🙂
Thanks for such an informative blog, looking forward to learning more…
Cass
Thanks for stopping by! We love natural medicine around here 🙂 I’m glad your son is doing so well.
My Nickybear had 2 seizures and each one took years off of my life. Thank you for writing this. Great job Savage!!!!!! <3
It’s an awful thing to go through–to feel so helpless. Thanks for sharing your son’s story xoxoxoxox
Savage, thank you for this insight. My son’s grandmother has a seizure disorder (and lupus). He is seizure free at 11 but I am constantly hearing about our kids developing seizures during puberty. Something about hormones and metals fighting…regardless I’m scared to death.
Our daughter is the same as yours…started asking questions at about 6…I just said he learned differently. This year (2nd grade) she’s in an inclusion classroom with 4 boys with autism. NOW she gets it.
It’s so hard for the siblings to understand all of this. These kids have had to grow up so fast and deal with things at an earlier age than most kids. These are the ones who will grow up to make such an impact on the world and change things for the better!
Bless you…so understand every single word…thanks for sharing.
Thank you for reading 🙂
Great, great blog! The only time my knees have literally knocked was when my son was seizing.
The developmental nurse (doing our assessment 4 years later) noted that ALL seizures are important, and that even ONE seizure – even if it’s ‘only’ due to fever, puts a child at a much higher chance of having a developmental delay. Hmmm…our pediatrician told us it was no biggie. I think the word used was seizures with fever were “normal”.
It’s scary when you realize doctors view sick children as normal. Is it because there are so many kids with seizures that they think it’s not a big deal? My son’s school nurse said she’s had more kindergarten’s with febrile seizures this year than any other year.
We are just beginning our journey in recovering our nephew. I had no idea that language delays & seizures may have a link. Thank you so much for sharing this. We will be requesting an EEG now.
A 24 hour EEG is better because it will give you a better overall picture. My son would have increasing spikes while he was sleeping, that a normal EEG wouldn’t have picked up on. Do your research and don’t be afraid to ask your doctor questions. You know your nephew better than the doctors do. Find a neurologist who is willing to see your nephew as an individual and not just a child with autism. Best of luck and keep us updated on his progress!
I am waiting for the same questions from G & R about Harry. Still not sure how I’ll answer it. Love this Savage and Happy Easter!
Thanks, and the same to your family xoxoxoxox
Having watched one of my children turn blue and subsequently die, I know exactly what you’re talking about. Thanks for sharing, Savage.
So sorry to hear professor. Hugs
Thanks, Ana. It will be 10 years this summer, but the memories are all still there.
It’s a nightmare no mother ever wants to face, saying goodbye to their child. Your strength and courage humbles me every day xoxoxox
Even as a health care worker with many years of ICU experience, my sons first seizure brought me to my knees and frightened me terribly. My fright ended and the fight began when the neurologist did not wnat to do any tests or interventions because “these kids have seizures”!
This is the infuriating part of autism. The doctors flippantly saying “it’s just autism” when our kids have very real medical issues. I hope your son is doing well. Thank you for sharing your experience with us.
doing well- has been seizure free for over 3 years- turned out the seizures were caused by Tegretal which he was started on with the idea that his behaviors were silent seizures. After I dug deep into research, found out that it can cause seizures in some and since he was taken off of it- no seizures.
Bless you, and thank you for sharing,
Thank you 🙂