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.