Mother Warrior: The Bitter Sweet 16
By Teresa Conrick
Sixteen years ago today, I gave birth to a beautiful and healthy daughter. Life was good and I was grateful --- but that was not to last.
In the Spring of her second year, my daughter, Megan, began to change. It was subtle things at first, shyness and lack of eye contact but that then spiraled into her losing the ability to speak and understand speech, develop extreme sound sensitivity, refusal to eat many foods while beginning to have bouts of diarrhea and reflux, and not wanting any human contact---including mine. Her tiny and sweet voice saying, "bubbles", "cookie", "cake", vanished. My memory of this loss is encapsulated in a backyard bubble blowing afternoon when my Meg, no longer smiling or laughing, could not name those transparent circles. Her word for "bubble" became "emul" and she would say it over and over and over some more. She also began to have a compulsive need to carry two letters from the magnetic alphabet board, one in each hand, constantly. I knew something was very wrong and feared it was going to be devastating news. I was about to be right.
Working in a psychiatric hospital as a special education teacher was probably the worst place to be employed as I was learning my sweet child had autism. The days of the so wrongly accused, refrigerator mothers were not officially over yet and a cloud of shame began to follow me. The renowned neurologist whom we met with made his diagnosis based on a 20 minute observation. His parting words, "Try putting her in a nursery school as being around "normal" children may help her", showed just how dormant the science of autism was in 1995. I did enroll Meg in school but it was a special education program where all the children had some special needs issue. Meg though, stood out from all of the other children, and the team of teachers and therapists knew very little about autism or what actually to do to help my poor, lost child.
Over the years as autism has gone from an obscure, orphan diagnosis to the fastest growing special ed classification in every state school system, I have learned much about autism and Megan. It is often by looking back historically that pieces come together, that the dots connect. A prime example are the symptoms that Megan exhibited. Not one professional back then delved into why my child stopped eating, stopped talking, stopped wanting human contact, and stopped progressing as a 2-year-old. "Autism" was the answer to it all but the science and research now shows those symptoms to be the result of the true nature of her condition, a neuro-behavioral-gut-brain-illness, not co-morbid but the roots to the devastation of normal functioning. Thank you Dr. Rimland/Autism Research Institute, Dr. Wakefield, and DAN! (Defeat Autism Now), for researching and treating this complex and historically misunderstood illness.
In 2000, I first went on-line and my life forever changed. Megan had begun to exhibit bizarre and worsening behaviors. She began to hit and bite those around her, rip up paper everywhere, throw breakable glasses onto the ceramic floors, and dump gallon containers of milk and soap on the carpet. She had no language now and I was losing her more each day. The worst though were horrible, loose and smelly stools that she would often leave all over her bedroom. I needed help desperately but there was no one, including our pediatrician, who knew what to do except suggest behavioral interventions. We had already done 2 years of ABA in our home and Megan had currently started in a wonderful school for children with autism. None of that could make the horrible stools, pain, and lack of sleep better. On the internet I met parents who had the same stories, same symptoms, and same teams of professionals who could not answer why their children were so sick. A metamorphosis was happening as parents began to research medical literature, explore environmental sources, gather and report on data and labs, form organizations and internet groups, plan and attend conferences, educate their politicians, reach out to the media, and start meaningful and hopeful website blogs to change the history and future of autism (thank you, AOA!). A very big piece was emerging. A piece that overlapped from anecdotal family stories, to labs, to research, to a need for more research -- and that piece was vaccines.
Looking back at those confusing and "autistic" symptoms that Megan began to show in 1995 with the knowledge of 2009 is both helpful and heartbreaking. We now know that Megan and many other children have mitochondria issues/defects in oxidative phosphorylation, which can be a genetic issue worsened by vaccination or brought on by that very process causing a regression of functioning; zero or low levels of glutathione that make excretion of lead, mercury, and aluminum almost nonexistent (the toxic metals most seen in our kids and the two latter ones are found in vaccines though thimerosal has been decreased in recent years, it was in high amounts in most of the vaccines for Megan and her peers in the 1990's), as well as increasing mercury levels in the environment; visual/auditory/touch/taste/vestibular dysfunction are symptoms of poisoning, ie toxins such as mercury, lead and aluminum as well as bacteria and viruses (again, the two latter ones are found not only in the environment but in vaccines, too); chronic inflammation in both gut and brain due to the immune system not working properly -- ie, microglial activation (bacteria, viruses, metals), inflammatory bowel disease (an association between the presence of measles virus and gut pathology in children with developmental disorders, ie a new form of inflammatory bowel disease - ileocolonic lymphonodular hyperplasia ); impaired intestinal permeability ie-"leaky gut", reflux, gastritis, candida and clostridia overgrowth. All of these can produce pain and that is the one symptom that Megan had pervasively for years until we began to see a light at the end of the long and torturous tunnel -- biomedical treatments.
As the year 2000 became unbearable, I searched the internet trying to find what to do for Megan. I discovered a nearby doctor who had been trained to help children with autism. Through urine, blood, and allergy testing, he saw that Megan had many things not right with her. She had huge reactions with gluten, casein, and other foods, and even bigger issues with gut parasites, yeast, bacteria, and heavy metals. Eliminating the offending foods, removing the bacteria and yeast while supplementing her nutrient-starved body brought decreased behaviors -- the pain was dissipating. Her stool began to normalize as there were less and less of them with the notorious undigested foods present. It was at that time that I learned about thimerosal and the many vaccines that Megan had with it. I also went through her health history with this new doctor and cried as I saw how she became progressively sicker after each vaccine: ear infections, antibiotics, mysterious rashes especially after her MMR, fevers for weeks (though now she rarely runs a fever), horrible nosebleeds, reflux/vomiting and then the start of the green and chronic diarrhea. As those early years of treatment progressed, Megan was finally able to use the toilet. A gluten-casein-soy and corn free diet, digestive enzymes, and supplements were key. She was nine and just coming out of diapers but regardless of her age, it was a huge success. .
At age 16, Megan is still nonverbal. Her place on the autism spectrum is on the very impaired side. She is though, able to communicate her wants with a talking device, express love when not too overwhelmed, and is happy more than not though a recent eating episode of wheat and soy in an accidental exposure put her back in pain, reflux, diarrhea, irritability, poor sleep, self-injurious behavior (biting her wrist) and a deja vu of what life was like before science and autism met. Our current knowledge of what can reduce pain and increase functioning --detoxification, diet interventions, reduction of inflammation-- is the road to healing for many and to others, recovery from autism completely. But for some like Megan, who began the biomedical road later as it was not yet ready when she was young, or those who are possibly more injured and more susceptible, there are still biomedical pieces that need to be explored to make their healing complete. High strep levels in her gut and blood two years ago showed us why Megan began to have tics, repetitive movements very similar to Parkinson's and also to Tourette's, with acute, obsessive-compulsive behavior. Treating it biomedically brought those blood levels to normal and eliminated the bacteria in her stool (gut). All behaviors lessened then disappeared and shows how the DAN! approach can help these children, especially when antibiotics cannot be used or only temporarily kill the bacteria. Thank you, Dr. Usman for researching and treating Megan in the special way that you do as her physical and vocal tics were so debilitating! This is the type of research needed, metals, bacteria and viruses, as well as a study of children who were vaccinated compared to those who were not.
I am grateful for all who continue to contribute to Megan's improvements in health and functioning and to my own healing from the depths of despair. Megan still has a long way to go but we are on the right path and for that I celebrate her birth, her life, and all of you who are with us on the journey.
"Remember Red, hope is a good thing, maybe the best of things, and no good thing ever dies." ---Shawshank Redemption
Teresa Conrick has two beautiful daughters. When she is not teaching, she is researching the biomedical implications of autism, both past and present.
Thank you so much for sharing your story and I have just started the research on what Bio med is and how to start and your story explains to me so much information. from the bottom of my heart thank you for your strenght and for your time in telling your story. God Bless :-)
Posted by: Gordana K | March 22, 2009 at 07:34 AM
Beautifully written Teresa. Your strength, love, and devotion for Megan is an example to all parents – with children of special needs or not.
I am proud to be your brother!
Posted by: John O'Connor | March 09, 2009 at 09:02 PM
I have been without internet access for the past few days due to our move. I hate going that long without the internet for fear that I would miss something important. And sure enough I did!
So I wish beautiful Megan a belated Happy Birthday, and Teresa, thank you for all that you do for all of our kids!
Posted by: Sylvia | March 03, 2009 at 09:16 PM
Autism Grandma -
Thank so much for sharing your thoughts and kind words. You bring up a good point, one that I did not mention. I didn't dwell on my anger too much in Megan's story as I didn't want any of my critics using that as an excuse, by saying I was bitter therefore vaccines are the perfect "excuse" as that is the bulshit line I have seen from some of them.
Trust me, like you and all of us, I have anger, which is a good thing to keep up the stamina , keep up the fight and keep on moving forward.
There is no desperate blame in Megan's story. The facts speak for themselves.
Thanks again.
Posted by: Teresa Conrick | March 03, 2009 at 02:02 PM
Dear Teresa,
Thank You for sharing your heartfelt story. In reading this I feel both sad and grateful...sad that you didn't have any answers for so long, but grateful that you finally discovered solutions. And with my grandson I am grateful that my sadness has been overtaken by hope due to the answers which are leading to his continued progress. I am grateful for all of these precious children like your beautiful Megan, whose immense suffering has led the way to answers for the autism children now.
I try to focus on my feelings of gratitude and hope, but I am also ANGRY...Angry that your daughter and your family has paid such a high price, along with so many thousands of others, in this vaccine world of lies and greed.
I am praying that God will Bless You With More Answers and More Hope and More Strength to Keep Fighting the Battles.
Posted by: Autism Grandma | March 03, 2009 at 01:10 PM
Teresa,
Thank you for writing this. I think it takes great courage to allow others to take a glimpse into your life. For the life of me I can’t figure out why the vaccines don’t cause autism crowd cannot accept that thousands of families have a story similar to yours. Thank you for sharing. I too love the Shawshank quote.
Posted by: Kub Marshman | March 03, 2009 at 12:57 PM
Happy sweet sixteen dear, sweet, Megan!!
Thank you, Teresa for sharing her life story so that others might learn and understand!
Thank you for never giving up!
The Wessels
Posted by: Lin | March 03, 2009 at 11:31 AM
Happy Birthday Sweet Megan!
Bravo Teresa for always, always fighting for Megan and all children. It is the people like you who make it safer for the children of the future. I see your daily life and don't know how you do what you do. You are so strong. Thanks for taking such great care of Megan. You are truly amazing.
Posted by: Sue S. | March 03, 2009 at 09:36 AM
Thank you Teresa!
I think the most important characteristic of a warrior mom is the ability to go against the flow, willing to be different and stand behind what you believe and see with their own eyes what they know to be true.
As Laurel Thatcher Ulrich said: "Well behaved women rarely make history."
Let's all keep misbehaving, there is a generation (future and present) to rescue!
Posted by: Maureen O | March 03, 2009 at 08:24 AM
Teresa - I met you so early in my journey and every day I'm so thankful I did. You are a true hero and I hope you recognize that in yourself. I totally get how each birthday is bittersweet. Everyone thinks is such a wonderful day but part of me dies inside at each one when he still isn't talking to me and is so severly affected by autism.
Thank you for your wonderful story!! I'm so lucky to know you!!
Posted by: Molly | March 02, 2009 at 11:41 PM
Teresa,
Your writing is beautiful, as is your daughter. I hope that as you move forward, each day continues to be brighter.
Love to you and your family,
~michele
Posted by: michele i. | March 02, 2009 at 09:17 PM
Teresa,
How lucky I have been to learn from and be inspired by you. You are an amazing woman, mother, and activist. What a beautiful article. What a beautiful girl. Happy Birthday, Megan.
Julie
Posted by: Julie Obradovic | March 02, 2009 at 08:18 PM
Happy 16th, Megan! You are a beautiful girl with a loving mother who is fighting for you every day!
Teresa, all of us appreciate what you and the other warrior parents of older children have done to help pave the way for those of us with younger children! Thank you for your dedication and hard, hard work!
Posted by: Laura | March 02, 2009 at 08:00 PM
Thank you all, so much, for your heartfelt comments! Meg's birthday has always been an emotional day but this one has turned out to be a hopeful and inspiring one.
To Randy-
Yes, that was me, sitting on the floor trying to decipher all that information -- small world! Glad I could help and hope your journey is going well.
Posted by: Teresa Conrick | March 02, 2009 at 07:56 PM
I had the pleasure of sitting / speaking with someone named Teresa at the last A1 - someone who took the time to help fill in the blanks with my son's treatment - at the Amy Yasko presentation.
I wonder, whazzat you, by chance? (I would have been be the tired looking old Canadian fart with the bleeding eyes sitting on the floor at the back of the room...). Seems ridiculous that I don't clearly recall - exhaustion and all that I suppose - but that particular Teresa, if I recall anything, was one razor sharp Mom. She also had the "ask me anytime for help, but don't try to f$ck with me" kinda vibe.
In any case, Happy B-Day to Megan, and thanks for a hand along the way (we're not that far behind you, on the same journey with our now 12 year old son).
Posted by: Randy | March 02, 2009 at 06:01 PM
Wishing you, Megan and Mary blessings of health and hope - now and always. Words cannot express my gratitude for your friendship, wisdom and allegiance to our cause.
Posted by: Karen McDonough | March 02, 2009 at 04:45 PM
Teresa - this hit me so hard because you could be telling my story - with one difference. Because of people like you, I was made aware of the possibility of recovery when my son was only 3. I have the support and help of the trailblazers who went before me, and can offer only my eternal gratitude. Thank you, and a very happy birthday to your beautiful daughter.
Posted by: chrissie | March 02, 2009 at 03:53 PM
Happy Sweet Sixteen Megan!
Teresa,
This article is wonderful. I read it three times! Thank you for sharing your journey and all your efforts in "your spare time".
Best, C.J.
Posted by: cj | March 02, 2009 at 03:45 PM
Thanks, Teresa, for writing this wonderful article and for sharing one of your lovely daughters with us. You are one of my heroes.
Posted by: nhokkanen | March 02, 2009 at 01:14 PM
Another red-headed beauty to join Hannah, Chandler, Candy, and others. It never ceases to amaze me on how absolutely beautiful our children are -- seriously. There is just this "look" our children have that defies explanation and provides a unique glimpse into their spirits and although none of us asked for any of this, *that* is one comfort I am so grateful for. I've often described Miles as having the most "gentle spirit" and "tender heart" of anyone I know and I “see it” in all our children.
Teresa, I've always felt a kindred spirit with you because of our children's ages. Like you, I surfed through the 90's with not much to go on in terms of answers or support. And like you, I found out about Miles' autism while WORKING as an Instructional Assistant at Ft. Bragg in a *drum roll please* self-contained classroom for children with autism! God's way of preparing me for the road ahead.
Happy Birthday Megan.
God Bless,
Kelli
Posted by: Kelli Ann Davis | March 02, 2009 at 12:54 PM
Happy Birthday sweet, beautiful Megan. Please know that today I celebrate you too, Teresa. You are a wonderful Mother who never gives up the fight and a good friend who shares her abundant knowledge freely with all of us. Thank you for sharing your story. It brought a tear to my eye as it sounds all too familiar. Every minute of every day we love our children to a depth some will never conceive.
Posted by: Susan Hofherr | March 02, 2009 at 11:30 AM
Happy Birthday Megan!
What a beautiful girl. So glad that she has found the ability to communicate through a device. May science evolve to help the children born in the 90s.
It grieves me that parents were so utterly ignored.
Posted by: karenatlanta | March 02, 2009 at 11:23 AM
Thank you so much, Teresa, for this excellent article. My son is 16, too. Your daughter is beautiful. Very best wishes to you and your family, and thank you for all that you do for our community!
Posted by: Twyla | March 02, 2009 at 11:23 AM
Teresa and all
Try having your kids in the early eighties, where we took our son to a psychologist to do holding therapy, because "we were cold and unfeeling parents"...somehow the struggle in my arms would calm my child down and force him to look at me. I can't believe I even thought that was going to help. Obviously, my child, and subsequent another child, were in clear pain from autism. Inflammation in the brain...try that for one day...see if anyone could take it...or how about undending pain in the gut?
Biomeds have helped my children. They still have autism, but they are clearly better, even seizures are less and or even abatted. We have spent a lot of money on so called "useless" and "futile" treatments. I have had fights with doctors, I have had to fight every day of their lives to get the services they need, and I have had to argue with school systems, boards and whomever I could who got in the way of my children.
Now the next fight is clearly the worse. The giant realization that you won't be on the planet that much longer, and that there is no one like YOU that can take care of them. I have two NT daughters who voice they would be glad to, but what if their spouses can't take it? What if it busts up their marriages? What if their children resent "uncle and aunt" blanco?
That is why we are making contingency plans. Yes, we still have them at home, and we will until we can't...but we have to get real. The realness of it sucks.
Back then, we didn't have a computer, we didn't have the network of parents to go on. We had once a year autism conferences, which mainly focused on education, and the beginning of ABA. But I knew in my heart, that was not enough for my children, there was something MEDICALLY wrong.
STill in those years, I remember having to physicially take one physicians hands and placing them on my child (yes, I really did that), to show him how bloated my son's stomach was, and you are going to get him a CT scan to rule out things. I have had to FORCE doctors to look down my children's throats, look in their ears (after a seizure in ER the nurse looked in his ears and was aghast, and I quote "when was the last time your physician cleaned out your son's glue ear).
Our kids are do not touch, do not tell variety of people...but now things are changing...our force of nature, and our love for our children abound endlessly in the news, in our advocacy, and the giant question is now at hand...did mankind cause this?
Finally I found a physician who admits everything his profession has done. He admits to mercury poisoning people, he admits that we are poisoning our kids with our foods, and our vaccines, and our waters. He hates his professional collegues, and possibly is why he doesn't have a partner...he doesn't want to deal with "personalities"...he has had to physically sell his home, because he will take patients without insurance, and will go the extra mile to get test results a and natural medicines and "so called out there therapies" that make differences in the lives of our kids. He won't except no we can't.
I gave him a copy of the USA today article...he works in a building of pediatricians...he hung it up on his glass opening to his office, for all the mothers to see as they walk by. He doesn't care a rats behind if it irritates his neighbor collegues.
So, I understand what Megan's mom has been through...I understand that way autism use to be, our faults. I understand way differently now.
Happy Birthday Megan, you are beautiful just like my kids, attractive, alluring, and smart. You are smart because you chose a great mom.
God bless all the moms out there, who clerly of Godly origin and design...in whom God himself has entrusted these children to.
Posted by: Kathy Blanco | March 02, 2009 at 11:16 AM
Happy Birthday Megan!!
I agree with Dan, few people know how much Teresa does for our children. She is a ferocious investigator of the science of our children. Over the years of being on line and watching so many parental posts and articles I became more and more aware of what Teresa was bringing to the table. Science, Science and more relavant science. I began to have to dig deep to gain understanding in the medical studies she would post try and translate them to layman's terms. She has defintiely made me a better researcher and more equipped to understand my son and my other children's issues more than every doctor combined in the 1st 4 years after my son's regression. So, I thank you Teresa, for all that you have done for our kids and for myself and my son. You are a true Warrior Mom and I am greatful to have had the opportunity to learn from you.
Posted by: Allison | March 02, 2009 at 10:45 AM
Happy Birthday to you, Megan! Thank god; god gave you a great,smart mommy to love and care for you! Happy Birthday to you!
Posted by: Dana C. Sturdivant | March 02, 2009 at 10:23 AM
Teresa, you inspire us all. Happy birthday to your beautiful girl.
Posted by: Wendy Fournier | March 02, 2009 at 10:08 AM
Teresa,
Wonderful, informative article. To quote a post from someone here over the weekend, "I pity [pray for] any autism parent who still places trust in the current mainstream political-medical system", and has not yet discovered biomed treatment. I often see children running around with aggressive, destructive behavior and I make a gentle suggestion to the parent how the behavior could be caused by yeast/bacteria/food intolerances and perhaps they should see a DAN doctor and have the child tested. Most of the time they then simply take the child to their neuro, psych, or dev ped who prescribes yet another drug. I know one parent who asked their mainstream doctor about testing for yeast etc., and the doctor checked the child's tongue and said, "His tongue is clear. That means he doesn't have any yeast." And the parent, of course, believed that doctor. I will, however, never give up trying to help a child with my "gentle suggestions".
Our son Dean has made tremendous progress with biomed treatment. That fact was just validated at his recent IEP meeting when his teacher said, "By law we have to write a behavior plan for every autistic student, but Dean doesn't have any behaviors." (THANK YOU BIOMED :o) Just a few short years ago we thought we would never hear words like that about our son. Like your Megan, our son is also nonverbal and uses a communication device.
Happy birthday Megan! What a beautiful Irish girl, and how very fitting to have a March birthday, the month of the Irish!
Posted by: Diane Frioni | March 02, 2009 at 10:02 AM
Happy Birthday Megan!
Teresa,
Thank you for sharing Megan's story with us. Your ability to present the connection between behaviors and our kids' medical problems will help many families new to the world of autism.
Great job! :-)
Posted by: Jeanne | March 02, 2009 at 09:13 AM
Happy birthday, lovely Megan. You have a great mom.
Posted by: René | March 02, 2009 at 09:11 AM
Happy Birthday to your beautiful, Megan!
I will keep fighting for your daughter, my son, and all of the other children that became collateral damage to the vaccine program. We can never lose hope.
Thank you, Teresa, for sharing your story.
Posted by: Kecia | March 02, 2009 at 09:08 AM
Few people know how much Teresa also does in her "spare" time to help the cause overall and Age of Autism in particular. We are fortunate to have her although we wish we could just be friends and not Matrix battlers; the bad guys cannot ultimately survive the guts, smarts and determination of people like Teresa when they band together and demand the truth -- happy birthday Megan! your mom is the best!
Posted by: dan olmsted | March 02, 2009 at 08:53 AM
Thanks Teresa, for that wonderful piece. It's a great way to start the week. Keep trying, Red. "Hope dies last".
Happy Birthday to Megan.
Posted by: Harry Hofherr | March 02, 2009 at 08:43 AM
Teresa,
Happy sweet sixteen Megan! She is such a beautiful girl. Never give up hope - we are all in this with you. Beautiful girl, beautiful mother!
Posted by: Sonja | March 02, 2009 at 08:39 AM
No Kim, I hope that Paul Offit reads this. Those wackodoodles will never have any influence on the vaccine program which is a disastrous mandate for too many children. If the people, and I use that term loosely, who have influence will for one minute think about the lives they are ruining, and instead try to ameliorate the harm from the present schedule, well, then Megan and Andrew and your girls will at least saved millions of others from the same fate. T, Happy Birthday to your beautiful Megan and thanks for the early morning cry on this snowy day in NJ! I will see you at A1 as well! xo
Posted by: Heidi R | March 02, 2009 at 08:25 AM
Teresa,
What a beautiful daughter you have. What a story you have to tell. Thank you for sharing such a personal chronicle - it is so important that you do.
You eloquently show how most behaviors we see in our children can be explained by medical conditions and thus improved upon.
Happy birthday Megan!
Tim Kasemodel
Posted by: Tim Kasemodel | March 02, 2009 at 08:20 AM
She is really beautiful. Happy birthday Megan!
Posted by: Natasa | March 02, 2009 at 08:16 AM
Teresa, Beautiful and heart-breaking. Thanks so much for sharing this story with everyone. It is so important. I extend a very happy birthday to Meg and my love to the both of you.
Maurine
Posted by: Maurine Meleck | March 02, 2009 at 08:06 AM
Teresa,
Your daughter is an Irish beauty. That hair, those eyes. And the emerald shirt she is wearing- a vision.
Gorgeous...thank you for sharing Megan's story.
I am sorry. I am sorry for all the kids and all the families who have had to live through this nightmare.
Keep up the good fight Teresa. You are an inspiration.
Andrea
Posted by: Andrea | March 02, 2009 at 08:06 AM
Teresa, Happy Birthday to Megan. You know, I think about how the Wackospherians torment you on their blogs and for this one day, I hope they are reading A of A. (Who am I kidding, we're oxygen to their pathetic hobo camp flames.) We write and blog and fight like hell for our beautiful children. Megan - my God. She's preternaturally attractive. A real colleen.
I won't tell you I'm sorry. I hate when people tell me that - don't be sorry for our children. Help us fight for them.
Happy Birthday Megan Conrick. See you Autism One, "Red."
KIM
Posted by: Stagmom | March 02, 2009 at 07:37 AM