“Suffering isn’t ennobling, recovery is.” Christiaan Barnard
I suppose if my son wasn’t so obviously sick I wouldn’t be so offended by the “Celebrate Autism” garbage that comes out every April. If I had a happy, healthy child who just had a quirky way of looking at the world I probably would celebrate his differences and marvel at his unusual strengths. But I don’t have that child. I did have a happy, healthy baby until he was injured by vaccines and antibiotics. Now I have a child who is recovering from damage done from the top of his head to the bottom of his feet. I do celebrate every single gain he 
makes, even the tiniest, and I am intensely proud of him because of how hard he has to work at things the majority of the world takes for granted.
I really mean it when I say he was injured from top to bottom. There is no cause for celebration in the magnitude of destruction done to my child’s body; brain inflammation and seizures, headaches, hypothyroid, severe eye infections and double vision, chronic upper respiratory infections, ear infections, auditory processing issues, asthma, inflammation of the small intestine, pancreatic insufficiency, leaky gut, inability to digest many, many foods, allergies, alternating chronic diarrhea and constipation, searing gut pain, parasites, opportunistic gut infections, low gut motility, low muscle tone, proprioceptive and vestibular issues, sensory issues, flat feet, auto-immune issues, and mitochondrial dysfunction.
Do they make a Hallmark card celebrating searing gut pain? “Congratulations on developing seizures”? “Must be awesome not to know where you are in space”? They do not.
We don’t celebrate Alzheimer’s. We don’t try to tell people that Dementia is advantageous. We don’t make bumper stickers that say “My granny with Alzheimer’s is smarter than your honor student”.
I hate how much pain Nick has suffered, although his physical injuries, poor lab results and biomarkers have given us avenues into his body for healing. For instance as we have decreased the inflammation in his G.I. tract his autistic symptoms have decreased as well. If he hadn’t been sick we would not have had the clues of how to help him bio medically. I’ve met many autism moms who say “but my kid isn’t sick”. To that I say “lucky you.” Although I wonder because at a glance I often see in their child many similarities to Nick; low muscle tone, very pale skin, dark circles under the eyes and a bloated belly with skinny arms and legs.
I’m not belittling the immense contributions people with Autism have made. Those contributions are very real and speak volumes about the power of the human spirit to triumph over hardship and of the brain to compensate and to rebuild. But don’t try to tell me that the damage we are doing to a generation of children is a ‘Gift’. Plowing a generation of children down with toxic overload because you can’t stand up to an out of control pharmaceutical industry is criminal. Yes, many of these damaged children will contribute very positively to the world despite the physical and neurological destruction done to them. My son will be one of them. But I’m curious if the contributions of this generation will be seriously hampered by what we have done to their bodies and brains.
I’m not celebrating that Nick has been in pain for most of his childhood. That I don’t really feel like he’s had a childhood. I’m not celebrating that he hasn’t developed friendships and play. Or that a lot of his time has been spent having medical appointments, therapy, taking supplements and medication. This hasn’t exactly been a party. I’m not celebrating what this has been like for his sister. I know, I know…she will be stronger for this experience. I get that. Having an autistic sibling is building her resilience and empathy and lots of other good things. But it is also making her anxious and sad and they don’t have much of a relationship right now which in turn makes me anxious and sad. The damage autism has done to my family was unnecessary. Why on earth would I celebrate that?
There is no Hallmark card celebrating “Happy MRI” or “Good luck with the 5th Ear Tube Surgery” or “Bon Voyage for the month spent going to HBOT”
Trust me we are not celebrating the behavior challenges of autism in this household. There are no pictures on the wall of the year I spent carrying a screaming toddler Nick on my right hip because he would not be put down. I didn’t take any videos of the hours that added up to days that added up to weeks and months of Nick staring out the window waiting for someone to help him feel better so he could rejoin the world. I’m not throwing a party about the kicking, hitting, and hair pulling that have been the hallmark of this winter either. Least of all will I ever celebrate the mind-numbing prison of OCD that holds Nick hostage and takes his family as well.
What I do celebrate about my son is that despite what has been done to him he maintains an open and trusting relationship with people and that he works so hard every day to join us more in our world. In the same situation I don’t know if I would have the stamina or the faith?
You can’t destroy a generation of children and simultaneously tell people to celebrate it! Autism is medical. These kids are sick. When you heal their bodies they get better. Some recover. Autism is not a mystery. Big Foot and the Loch ness monster are mysteries. Autism is toxic overload.
The Hallmark card you will see “Congratulations on recovering from autism”, “Hey Dude, I heard you lost your autism diagnosis, well done”, “Elmo says High Five on losing your diagnosis”. That’s the card you can send me.
-Mama Mac
p.s. Coming to Autism One? Come see me talk about the TMR book with Louise Habakus who wrote Vaccine Epidemic and Jennifer Margulis who just released Business of Baby, Saturday at 5pm.
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Well said! While my son has really strong muscle tone and looks like he should be a body builder, he has leaky gut, anxiety, tourettes, and OCD. It does take the whole family hostage. He is the middle child so in essence, my oldest and my youngest feel in some respects like only children, or oldest at any rate. My daughter distanced herself from the family as fast as she could and my youngest is now pretty much doing the same thing. My husband and I seem to be expected by all of the “helpful” programs to keep up on their paper work ad nauseum and lay out our life blood for our son, never mind that we have another younger son we are still raising. We are supposed to be broke and stay broke because the work we need to do on our sons behalf seems to be top priority. At least according to the court system, as his guardians and according to the other programs. I so wish I was wealthy, I would tell them all where to put their “helpful” programs that want me to prove year after year that he is still disabled. I’m tired of the bondage. I love my son and yet I think we families need some kind of real help, not a pat on the head and throw us a bone. I’m exhausted, so is my husband. We need some sort of help, a vacation perhaps. (Haven’t had one alone in 17 1/2 years!) The government just doesn’t get it.
Great post! Totally agree.
When people have said such things to me, I feel a certain finger raising up…if you know what I mean.
My son is diagnosed with Autism and OCD, and what a struggle is has been. My wife and I have been close to a divorce due the stress my son places on our family. He has no friends, and others think he is quirky and stay away, that includes members of our family. Due to his behavior we are no longer invited to family functions, and honestly, that really does not bother me. We have been asked to leave Dr offices and have been struggle with the school, on a regular basis just to keep him in school. I sometimes think that he may be better served in a facility that can meet his needs, then I feel guilty for even considering that option.
Joe..hang in there. You are not alone! My marriage too has taken a huge hit for dealing with 10 years of intense stress over a sick child who we both adore. I pray there is light at the end of the tunnel for all of us.
Please elucidate for all of us how vaccinations precipitate flat feet?
Totally bawled! I was one of those parents that said my son is not sick while his belly was distended with skinny arms and legs and dark circles. I believed every Dr. that said he was just fine while he screamed in pain from impaction. I love you all sooooo much! LoRenzo went from a 40lb malnourished body to a 63lb perfectly proportioned soft belly body! It’s so important to get the parents being duped by the whole celebration, acceptance bull and heal these babies!
Reading your comments about brain and mitochondrial damage done by the vaccines I’m starting to wonder if Dc Wahls’ food protocol (described in her book “minding my mitochondria”) could be of help.
PS: If someone starts using it, and it does help, thank you for letting me know, I will recommend it to more clients.
I am as angry as you all are and am stunned by the greed and evilness that seem to rule this world sometimes. I wonder what damage our poor children are going to carry over onto our grandchildren and future generations. My son was also damaged by a bombardment of vaccines, massive antibiotics, gmo’s etc…etc…he is not only on the spectrum but developed Tourettes a year and a half ago shortly after getting MORE vaccines. Of course it couldn’t have been the vaccines?! I must be crazy…. well, my question for you guys is how do I keep him in public school and not vaccinate? We are in NY. I’m assuming he’s good for a few more years until middle school (he’s 9) but I’m stressing about putting anymore toxins into him. I know there are 2 exceptions but from what I’ve heard it is VERY hard to get an them approved, even with a doctor’s note attesting to damage. Any help would be appreciated…thanks so much..
Adrienne I wonder if Savage or the Prof could help you? They both know NY law well when it comes to Vax exemptions. Nick has some Tourette’s symptoms as well, I sympathize with you and your son. No more shots for our kiddos for sure.
Sorry, I’m new to all this. Who are Savage and Prof? Thanks for your help…
I’m from NY. My son was born & damaged there. (Ha!) We moved to the Southwest when he was almost 4. Getting vax exemptions for my kids here, where we live now, has been pretty easy. The vax exempt issue was not one of the factors in the decision to move, but seeing how NY is one of the hardest, if not THE hardest state to achieve exemption status, boy oh boy am I glad we did!!!!
Check out these sites for help/info/forms….
https://www.google.com/url?sa=t&rct=j&q=ny%20vaccine%20exemption%20form&source=web&cd=1&ved=0CC8QFjAA&url=http%3A%2F%2Fwww.vaclib.org%2Fexempt%2Fnewyork.htm&ei=jm6BUcyUCsffqAHQmICwCg&usg=AFQjCNEa7Ea0nvKukHP0PbQ70XKkdqejqA&bvm=bv.45921128,d.aWM
https://www.google.com/url?sa=t&rct=j&q=ny%20vaccine%20exemption%20form&source=web&cd=3&ved=0CDMQFjAC&url=http%3A%2F%2Fwww.nyc.gov%2FSchools%2FOffices%2FHealth%2FImmunizationInfo&ei=jm6BUcyUCsffqAHQmICwCg&usg=AFQjCNEB-K5qOomJ-8Ej6RjjdswQ8tm1g&bvm=bv.45921128,d.aWM
I loved this write up!! These things like “celebrate autism” and all of these “awareness” campaigns are to me just the empty things people do and participate in to give them that feeling of having “done something”. The problem is that these things have replaced real and meaningful action. I’ll pass on the celebrating my sons autism too. I’ll celebrate him, and his accomplishments - but not his disease.
Shout it from the roof tops! I feel very much the same way as you. Why celebrate vaccine injuries/brain damage?! Why celebrate a whole body illness that can destroy lives…emotionally and financially?! Why celebrate a disorder that divides the very people impacted by it?! Love my kids w/ ASD to the ends of the Earth…I embrace every inch of them but I would never choose this life and this life long struggle for them…ever!
Dear Mama Mac,
I understand your point and live it as well. We take joy in each of our son’s accomplishments, goals met, or milestones reached, whether small or big. Like you, we do not get wrapped up in celebrating Autism, although, my intention isn’t to diminish parents who seek this path. I believe it may be their way of coping. I could be wrong. Since he was diagnosed, we have tried and explored different paths toward healing our son, through changing diet, trying supplements, removing toxins in our home, etc…all while practically going broke. He too suffered from bloating and distended tummy. How and why would I celebrate the near financial ruin of our family, my endless worrying about his future and my legal struggles in securing an appropriate educational component? While he isn’t fully
recovered, he has made progress, is more verbal, is now reading and decoding words. However, allergy season tends to take him down and affects his focus, so now more to worry about. Often times, a positive is countered by several negatives, so how could I want to celebrate? I get your point completely. I try to remain positive around our son, for his well being. It can be a struggle to maintain this “happy” face, but I do it for him. I am so grateful to you for taking on this mission and humbly thank you and all of the Thinking Moms who are fighting for our children.
I can be thankful for autism, without ever thinking that I would choose it for my or any other child. It took me a long time to get here.
It’s like this: Autism gives me a lot of opportunities to learn unconditional love. It has taught me that I am strong. It has taught me that I can and should celebrate every tiny progress. It has taught me what support looks like. It has taught me tolerance and acceptance I NEVER could have dreamt of having. Being an autism Mom made me a better person. So I’m grateful.
But, and this is a big but (even bigger than my big butt), I’d trade it all in for no pain ever again for my daughter and sons. I’d go back to being clueless for my daughter’s anxiety to go away, my younger son to never get the runs again, and my middle child to never wake up vomiting from a seizure. I’d do ANYTHING for them.
So when people tell me to celebrate autism, I say that I already do. And it’s true. I celebrate the good that has come of it. Because if I don’t, we all lose. I can’t cope without hope and happiness. So I’m taking it wherever I find it. Because it makes me a better Mom to my 3 autistic kids. (And my liver is grateful too).
p.s. Please note that I am not saying everyone should do what I’m doing. Everyone should do what is right for them, when it is right for them. And I don’t presume to know what that is. Okay? Feeling the need to say this because I realized this could sound kinda preachy. And while I adore preaching, that wasn’t my intent today. At least not consciously.
I don’t think you sounded preachy
I love your positive attitude.
Keep fighting.
So happy that the tides are turning. No longer will parents be expected to just accept what has happened to their child.
Parents don’t have to accept being told “Sometimes it happens” when their child regresses.
So many times we were told, “well now you’re just looking for someone to blame”. YES I BLAME YOU Mr. Pediatrician.
Keep writing. People are paying attention.
spoken from someone who knows xo I listen to every word this TM says
DAMN SKIPPY. So well said I can’t even think of anything to add. ~ BJ
Thank you for this honest, heart-felt post. My heart hurts for you and Nick and at the same time I am so proud of you as a strong mom doing anything and everything you can to heal your child and not caving to societal pressure to accept your child as-is. Because it sucks and it’s not right. Why should anyone accept that?
Perfect. Thanks for this one!
Love this!!!
Mama Mac-
I sooooooooo appreciate your point of view. I too find myself PISSED off at what happened to my son. The tantrums (oh the tantrums) and the screaming in pain and the rolling on the floor and the asthma and the breathing treatments and the hives and the doctors appointments and always fearing he’ll go into anaphylaxis etc…. it is so overwhelming. I mean honestly I’m terrified to let him out of my sight….
My hope is that my journey with my son will inspire others to live cleaner and healthier, to question the medical advice they seek and the chemicals they expose themselves to. It is unacceptable to have an entire medical culture who turns their nose up at the very mention that vaccines and antibiotics could have anything to do with the health of our sons. You know and I know that’s EXACTLY what happened.
However I believe in all my heart ADD, ADHD, autism and food allergy are not the only ramifications of a society unwilling to question the barrage of chemicals injected into everything they touch. I truly believe we are being poisoned on all fronts…. from the vaccines and antibiotics, to our household cleaners, our cosmetics, our fertilizers and pesticides, the GMOs, the chemicals and additives we have in our food supply, and don’t EVEN get me going on the pharmaceutical industry….
I join you in “Not Celebrating”. I- in no way- am “celebrating” the poisoning of my kid. I choose to fight. It took him being ‘injured’ to make me understand all of this and for me this knowledge is truly a gift.
This journey is so hard and I am encouraged by your fierce love for your son.
I will continue to draw inspiration from you.
~Christy
Fellow Warrior Mom
Coming together is a beginning; keeping together is progress; working together is success.
Henry Ford
Here’s one for you: congratulations on another stellar ATEC drop! Nick is awesome and you are a wonderful mother! FUA!
Very timely post. I was just thinking yesterday as we were having a very bad day, “gift my ass, there are days this is complete hell.”