22nd Birthday, Severe Autism and the Bus Is Not Coming Anymore For Megan Conrick
By Teresa Conrick
I cried Friday. I don’t often let tears show but they flowed freely many times on that day, her LAST DAY as a student. I said goodbye to our wonderful bus driver and aide as my daughter, Megan, is twenty-two, today and our school district will have no further responsibility in her education. The bus will no longer pull up each morning to greet my severely affected daughter. Our driver and aide these past two years have been the BEST in all of the eighteen years Meg has taken the bus to school, a 45 minute drive each way. God bless these two beautiful people who showed care and compassion to my daughter, each and every day. I could go on and on and also compare them to others who
showed fear, anger and little patience for Meg, or the other bus company (First Student) who LOST my daughter on a bus numerous times with no radio. That’s right. The bus got lost and drove around for 3 hours on more than one occasion with my nonverbal child! It was not the first time that I needed to call and convince sane people that this was an insane situation.
Mary, Megan’s sister, had come in from college to attend the graduation. Unlike Mary’s high school graduation with fanfare and college plans, Meg’s final days in school have felt FINAL with the future uncertain. Having an autoimmune diagnosis, seizure disorder, Gastroesophageal Reflux Disease (GERD), specialized food and dietary restrictions, impaired cognitive and communication abilities, and intermittent OCD/agitation/aggression, life for Meg and us has been challenging to say the least. BUT since we are now so very focused on her immune system and her microbiome, things have been slowly improving -- for starters, her graduation was one of the highlights of my life! She was so HAPPY, ATTENTIVE and LOVING to all around her. The affection that staff and peers had for Meg was shown in a series of slide shows that had us laughing and also in tears. The spectrum of autism was all around but even more obvious was the powerful force of support and love.
Megan’s dad had met us at her school. Though her dad and I are divorced, we sat as a family, proud and teary for my daughter who has endured a rough life but with faith and trust, a better future. We had roses for Meg and also for the school staff, the most devoted, patient and caring teachers, aides, and therapists. Megan had joined the school after I had hired an attorney, as there was no autism program in our school district that was APPROPRIATE back in 1996. Megan has attended there ever since! Over the years as we learned of Meg’s GI issues, parasitic infections, bacterial infections, high and crazy viral titers, food intolerances, seizures (she had her first grand mal in class), and now autoimmunity, the staff has been so supportive and attentive to my daughter’s needs. I thank God we were lucky enough to be one of the first ten families chosen when the school opened as the epidemic was first taking its captives.
I had baked 48 gluten-free, casein-free, soy-free, and peanut-free cupcakes for the students in the Transition program. The issues of the gut and autism are key in the health and behaviors of those affected, especially those with the most severe symptoms. I continue to explore the microbiome as the key in helping my daughter’s GI AND AUTISM symptoms.
Having a child with an autism diagnosis requires a tough skin and survival skills learned as you go. So now we are at a new junction in our lives with new survival skills to be learned as we go. Six years ago, I wrote about Megan and her Bittersweet 16th Birthday. Since that time, Megan has had to endure seizures developing and then an autoimmune diagnosis. Our journey continues and here we are at age twenty-two, school has ended and the trail ahead is not blazed for her individual needs. Like we have done since Megan regressed into an autism diagnosis after her MMR and Hib vaccines at eighteen months, we must survive!
Survival would include the biomedical treatments, medications and foods that target her immune system and microbiome, safe and compassionate people to care for her while I am at work, and a developing weekly schedule. Unlike her spectacular school, which she has attended since 1998 (age 5), adult day programs for those severely affected by autism are sparse (or depressing and not well versed on REGRESSIVE autism). I visited two in the past weeks and my friends, we need much more!
One was housed in a small office type building, clean and new, but the clients were in the age range of 30’s and up to 70! Where were all of the 20-year olds? These folks did not have the type of AUTISM we see today, but more of cognitive impairment and congenital disabilities. Some were in wheelchairs or walkers. Not appropriate for Megan. The second was a nice and big building, warm and inviting but alas, the small, severe autism program had a waiting list! In addition, they did not have any clients who had aides, something my daughter might need. She would be the youngest and female, in a mostly male dominated room. It was a program centered on Christian beliefs and seemed safe and nurturing, but not yet ready for the coming epidemic of young adults.
Megan has always been in the front wave of the TSUNAMI coming and as a result, we have had to endure obstacles and a world not yet ready for such disabled young adults. Life for us as trailblazers:
• hiring school attorneys to get appropriate educational programs
• training college kids to do ABA when it was rebirthed in the 1990’s when the epidemic began
• educating school staff and home support workers on NO gluten, casein, soy, nut, MSG and GMO foods plus the importance of ORGANIC.
• seeking appropriate medical care as the paradigm finally made its way from the wrongly accused Refrigerator Mothers, then BAD Mommy and Daddy GENES, to now -- the assault and onslaught of both mercury and vaccine damage, and how it is the GUT, BRAIN and IMMUNE SYSTEM that are impacted.
• sharing and speaking out on cutting edge, medical research and treatments. (THE MICROBIOME IS KEY!)
• sounding the alarm on VACCINE SAFETY and CHOICE to family, friends, co-workers, neighbors, politicians, and the media
It has been a harrowing and humbling voyage, riding the Tsunami.
What we do need as we move forward into the land of nonverbal and severe, adult autism:
• For us, to develop a unique plan for my daughter as AUTISM and AUTOIMMUNITY bring distinct challenges.
• To expand these adult programs with more parent feedback.
• To increase funding so that families can have more options, like living at home or in a shared home, with in-home care paid for by the state and federal government instead of inadequate and more often than not, depressing and unsafe housing.
• To push Congress to have Hearings on the real culprits and the true science of vaccine injury. Let’s hope in the near future, pharmaceutical companies who contributed to the epidemic of autism cases, are mandated to pool their money into a fund for the care of those stricken in the WAR ON DISEASE.
As for Megan, I have decided that we can’t leave her supportive school environment. They have recently opened an adult day program for the more severely affected and Meg will attend 2x weekly. It is expensive and is not funded by our local or federal government so for now, 2 days there for her and then home with nurturing caretakers the rest of the week, until I find or blaze a safe and affordable life for my daughter.
Meg is brilliant and gives me messages with modified signs and our unique language. She has been playing the song, This Little Light of Mine, I’m Gonna Let It Shine, over and over. She is telling me and all of us that her life matters and to be prepared for so many more Little Lights coming. They all need to SHINE.
Teresa Conrick is a Contributing Editor to Age of Autism.
Teresa you are such an amazingly compassionate mother and advocate. Meg is blessed to have a mother that fights for her and society is so lucky to have such a determined advocate, one so dedicated to helping not only your child, but others' children as well. Your openness and candidness about life with autism is something I wish everyone could read. Thank you for all you do!
Michele
Posted by: Michele Jacqueline | March 26, 2015 at 09:10 AM
Oh my goodness. So well-written and I share all your same concerns. My son is 12 now and in a decade I will be where you are. Thank you to you and all of the parents ahead of me blazing the way.
Posted by: Lisa Graham-Garza | March 26, 2015 at 09:02 AM
You are a wonderful mother, teacher, trailblazer and friend. This is a beautiful piece, laden with sadness, truth and courage. Thanks for being there when I needed you. with love, Maurine
Posted by: Maurine Meleck | March 03, 2015 at 10:46 PM
Someday there will be a generation looking back saying, "Thank God for Teresa Conrick and her daughter. Information in Teresa's hands was never wasted."
It's too bad the CDC doesn't have people of your caliber working for them.
Here's one to add to your growing pile:
A short summary: Antibiotics downregulate immune system, affect mitochondrial function, and destroy epithelial cells.
http://gut.bmj.com/content/early/2015/01/22/gutjnl-2014-308820.abstract
"Results We found that most antibiotic-induced alterations in the gut can be explained by three factors: depletion of the microbiota; direct effects of antibiotics on host tissues and the effects of remaining antibiotic-resistant microbes. Normal microbiota depletion mostly led to downregulation of different aspects of immunity. The two other factors (antibiotic direct effects on host tissues and antibiotic-resistant microbes) primarily inhibited mitochondrial gene expression and amounts of active mitochondria, increasing epithelial cell death. By reconstructing and analysing the transkingdom network, we discovered that these toxic effects were mediated by virulence/quorum sensing in antibiotic-resistant bacteria, a finding further validated using in vitro experiments."
Posted by: Jenny | March 03, 2015 at 07:48 PM
Warn Mary; caution Mary; never - to never - to never have a vaccine.
or you could end up supporting two.
Posted by: Benedetta | March 03, 2015 at 11:07 AM
You give birth. You think everything is going to be okay. Several months later, you are told your son is autistic. You have no fucking clue what that means because it’s 1990, by the way, and there’s no INTERNET, there’s no talk shows talking about autism, there are no support groups for autism, you are all alone with a diagnosis that nobody seems to be able to define. How the fuck did this happen? I mean, really, I am a health food freak, I work out, I didn’t drink or do drugs, what the fuck is autism? WHY is my son autistic? All I can see, when I look back and try to make sense of this is he was given a DPT shot at 3 months, then 6 months, then an MMR then he was diagnosed with autism then later seizures, and then after the seizures, put on a medication that caused him stomach pain that led to self-abuse. Jesus Mary and Joseph, help us understand this….help us help our children. WERE they damaged by vaccines, and if so, EXPOSE this evil pathetic system, and those who have worked so hard to cover up the “experiment” they did in random vaccinations up until the late 1990’s. And then there were YEARS of special education, but nobody in special education ever told us what could help our son, or what caused this mysterious disorder called autism, which is not described in ANY ancient literature......it's a man made disease..by fault, but fault of those who knew, and said nothing, by fault of those who participated and did nothing, for those who have stood by for those who have said nothing for those who have turned a blind eye, your time is coming in Karma.......speak out now on behalf of the autistic children who have been damaged by your obscene covert experiments like you did in South America years ago.....we know what you've done....and you better correct it....
Posted by: Terey | March 03, 2015 at 01:09 AM
Teresa,
words can hardly describe how scared all of us parents are- as we all face the lack of planning for our kids. I hope you will find Megan her perfect place- even if you have to create it. Megan is blessed to have a mom who cares so much.
Posted by: Tami G | March 02, 2015 at 10:30 PM
My 23 year old son feels there is no place in the world for him and has suffered depression and anxiety as he gas aged out of school age programs.I really can't say he's wrong. The world is not ready for our children and there is so much denial about the wave that is coming.They deserve so much better.
Posted by: Sue Warner | March 02, 2015 at 10:08 PM
So touching Teresa. Happy birthday Meg! You are blessed with a wonderful and loving mother.
Love brother John.
Posted by: John O'Connor. | March 02, 2015 at 10:02 PM
Hi Lisa,
I wanted to thank you so much for your very heartfelt comment. I completely understand and am definitely researching and writing more on these connections to the microbiome. I hope to have one ready soon on fecal transplants.
Thanks again!
Posted by: Teresa Conrick | March 02, 2015 at 09:35 PM
Dear All,
Thanks for your supportive and caring comments. Our kids matter now and always.
Thank you, Pam for your sweet comment!
Posted by: Teresa Conrick | March 02, 2015 at 09:18 PM
So well done Teresa. You absolutely captured the pain of these milestones and accompanying fear for the future. Megan sounds like a wonderful young woman of whom you are very proud. But finding productive opportunities to fill our kids days and make them as independent as possible is such hard and lonely work. You are an inspiring Mom.
Posted by: Katie Wright | March 02, 2015 at 09:15 PM
Teresa, you and so many parents at AoA deserve the "Courage in Life" award. I have learned so much from your writing and experience. AoA is the only place I go anymore that matters.
I know I have a heart because its breaking. I think the tin man said that.
Posted by: michael | March 02, 2015 at 08:13 PM
Wishing your daughter happiness on her new path.
Posted by: 4Bobby | March 02, 2015 at 07:30 PM
My son is 27 and I'm afraid he's too old to get involved with the education he so much wants. As a single mother trying to support my family and find my way through the healthcare system just to get an accurate diagnosis had been more than a little challenging and exhausting. He was not immunized but I was. He was first fed breastmilk then healthy foods. Antibiotics once. His immune system seemed challenged from the very beginning with seasonal allergies that wiped him out for two weeks every spring. Then a positive Epstein Barr titer age 15. Diagnosed with a reading disorder at age 8. A
Using my knowledge of therapeutic nutrition, herbs and supplements we've moved from symptoms of paranoid schizophrenia, then schizophrenia affective to possibly Aspergers with anxiety. Finding a qualified doctor trained to recognized Aspergers has been a huge challenge. Now the new DSM IV really throws us into a mess. He hates taking meds but seems to have frequent episodic decompensation. School? That would have helped us all. I pray that these sorts of issues get sorted out quickly. I'm not likely to be alone in this mire. NGT [email protected]
Posted by: Nancy Taylor, BS, DC | March 02, 2015 at 06:03 PM
Our hearts break over and over. Our's turned 22 last October. Lucky for us our districts legal team interpreted the law as "Through 22" so our boy gets to stay through Summer program. We have been debating what to do with all of the paper work, all of the school work, all of the art work. 19 years of it. 19 years of legal paperwork, minutes from meetings, angry letters, thank you letters. School work when he languished with teachers who did not get it, and beautiful work when the teachers did get it. Seems very disrespectful just to discard all of it. There are adult programs here but none that fit our boy. I won't go into it now, too sad and also disgusting. Love to you and yours Teresa. What a huge crowd of us there are.
Posted by: KFuller | March 02, 2015 at 03:16 PM
My 22 year-old will start his adult program April 1st. Fortunately, we got him into the program we liked the best and his health is relatively good (aside from the scrambled brain, that is). God help him and his younger brother when we are gone. Perhaps their healthy siblings can make sure they are well-treated.
Posted by: Ted | March 02, 2015 at 01:51 PM
Sending out heartfelt prayers for your family, and thanks for your trailblazing and all that you have written over the years.
Posted by: Twyla | March 02, 2015 at 11:20 AM
Dear Teresa,
I read your columns here religiously. Thank you so much for your magnificent ongoing contributions to this field. You, your daughter and the rest of your family are in my prayers.
I came to this site, not as a parent, but as a teacher who has been deeply, deeply troubled by the avalanche of physically and neurologically damaged children filling all of our classrooms today. My 5th grade class last year was so damaged that I felt there was little I could do for them -- they needed a really great doctor, not a well-meaning but grossly under-equipped teacher.
In addition to being a teacher for so many autistic and otherwise impaired children, I am also the sister of a man with schizophrenia. I have been surprised by how much of the latest research in the fields of autism, auto-immunity, and schizophrenia is beginning to converge. What are the common threads? I feel like if we could answer that question, we could cure all of these disorders.
I think you are so right to be honing in on the microbiome. What I'm sitting on pins and needles for, though, is the solution -- how to safely and permanently correct the problem, without yet having an accurate way to even diagnose it. I pray that the answer to this question will come soon, for all of us.
I am continually reading all the latest research in these converging fields. Among the most interesting reports I've seen, which may have value for children and adults in whom no other treatments are working, was the use of bone marrow transplant to effectively treat OCD in mice. The scientist essentially gave the mice a new immune system, and it cured their mental dysfunction. I wonder whether you or anyone else here at Age of Autism has been following this line of research, and if so, what your thoughts are. I know that some parents have been exploring fecal transplants as a means to correct gut dysbiosis. I guess this is along the same lines, though going through the bone marrow is more aggressive and would seem, potentially, to be more permanent.
I will look forward with great anticipation to your future columns.
Posted by: Lisa | March 02, 2015 at 10:31 AM
An alcoholic can't overcome his or her alcoholism without taking the big first step of admitting that they have a problem. Our government has no chance of solving the autism crisis until they are forced to admit that it is a giant problem. The elephant in the living room is vaccines but they refuse to acknowledge its presence.
Posted by: Dr. William Gaunt | March 02, 2015 at 10:24 AM
You made me cry again.
Thinking of you and your girls today and everyday.
Much love and strength to you all.
Posted by: Pam O'Connor | March 02, 2015 at 10:04 AM
Ahhh...the "trailblazers" section...a section that could have gone on for PAGES as we all know. I think only another "Autism parent" really understands what daily life is like for all of us. On top of the virtually-endless and non-stop battles we have fought and will continue to fight, many of our adult children remain childlike, despite being housed in adult bodies, and will continue to require constant care, monitoring, and help.
Our son, who just turned 21 last week, is also part of the tidal wave of the beginning of the "Autism" epidemic. The more I learn about how long we as a society have known about the dangers, make that the horrors, of vaccines, the more I know none of this should have happened to our children. And the fact that it continues today is both abominable and unconscionable.
Thank goodness we have places where we all can "meet" so we don't feel so alone, so we can feel instantly understood, and so we can unite to do our best to STOP this vaccine holocaust (on top of everything else we Autism parents must do that only those in the know truly have a clue about).
Thank you, Teresa, for sharing this tender moment with us so eloquently. I am glad that Megan's whole family was able to be there for her graduation. I pray that the next chapter includes warm, loving, patient, capable, and compassionate people to help Megan, and to help you, her loving mom, who no doubt works close to around the clock to help your own family, and many others. God bless you and your family, Teresa.
Posted by: Laura Hayes | March 02, 2015 at 10:02 AM
Teresa, my son Ben graduated five years ago. Here's a jobs program I'm starting for ASD teens and young adults:
https://www.youtube.com/watch?v=vxLeIegaTo4&list=UUMZuFw7-ey2plDsAov2q_HA
For a peek at the finished product, go to
https://www.youtube.com/watch?v=DGZqOHYNFjY&list=UUMZuFw7-ey2plDsAov2q_HA
It's a franchise program. Our next workshop is March 7. To keep trailblazing along a path like this, contact me.
Posted by: Dan Burns | March 02, 2015 at 09:52 AM
Teresa,
Thanks for writing this. Everyone here knows this heartbreak.
John
Posted by: John Stone | March 02, 2015 at 07:39 AM
"Meg is brilliant and gives me messages with modified signs and our unique language. She has been playing the song, This Little Light of Mine, I’m Gonna Let It Shine, over and over. She is telling me and all of us that her life matters and to be prepared for so many more Little Lights coming. They all need to SHINE."
I almost got through your comments with dry eyes .. but .. "This Little Light of Mine, I'm Gonna Let It Shine" did it .. having a hard time seeing the keyboard right now.
Thanks Teresa .. for all your "trail-blazing" contributions to AoA .. as you said .. "Megan has always been in the front wave of the TSUNAMI coming .. and .. my fifteen year old grandson is riding the same wave a few years behind her.
God bless our children ... "LET THEM SHINE"
Posted by: Bob Moffitt | March 02, 2015 at 07:26 AM
Were lucky as G hasn't a clue what's going on and is happy in his Autism. The only ones that suffer is the parents as usual and his older sibling, the two younger siblings think he is still great.Tare she younger siblings are sort of growing out of Dick Dasterdly but G is still luv`n every second of his constant rewinding of the same scenes for days and weeks.
Well said Tersaa thanks for sharing.
MMR RIP
Posted by: Angus Files | March 02, 2015 at 06:29 AM