Our Family’s Journey of Hope and Recovery

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Our Family’s Journey of Hope and Recovery
July 25, 1998
Living the dream
• • • • • Mark is happy and healthy He meets developmental markers Walking at 9 months Talking and using sign language by 11 months We move into a newly constructed house at 11 months • We vaccinate on schedule
Mark at almost 1
Our dream starts to slip away
• Mark receives 9 vaccines at 14 months while he had a cold • Due to illness I stop breast feeding at 14 months • By 15 months Mark is hospitalized with unexplained liver problem
• All sign language stops and verbal language decreases. • We see a speech therapist at 19 months and he is already showing signs of serious delay • We see two more speech therapists within the next 6 months and each time we are able to demonstrate regression • We start early intervention thinking we have only a speech delay
Mark is 2 and a half with a diagnosis of language delay
Turning 3=Autism
•Mark at 3:
• • • • • • • Less than 10 words Self abusive Paints the house blue Paints the dog with paint, toothpaste and shampoo. Forced to padlock fridge. Escapes in tennis shoes with the dog. Eggs the house.
•Mark is officially diagnosed with autism. •He receives 2 hours of speech and 1 hour of OT per week. •We enroll him into special education preschool.
Mark turns 4
•We are now completely gluten, casein, soy free and dye free. •We are mostly organic •We go carpet free, plastic free and chemical free-not Lego! •We only clean with vinegar and water and eliminate all fragrances •Mark has over 40 words •The head banging and running into walls is almost completely stopped •We say goodbye to the special education department and public school forever!
Mark turns 5
We enroll him in a 20 hour a week autism program
From age 5 to 7
Mark receives weekly: • 3.5 hours of speech • 3.5 hours of OT including horse therapy • 1.5 hours of music • 1.5 hours of ABA • 25 hours of one on one intensive therapy • 1 hour of RDI
From age 5 to 7-biomedical Treatment
e start B-12 shots which rock our world e chelate with IV EDTA and glutathione e start using homeopathy to treat illness and balance the body e see incredible gains
ow do we afford it? We don’t!
Mark turns 7
• • • • • We are still gluten, casein, soy and dye free and organic We have a chemical free house including organic PJ’s, bed sheets and pillows We continue B-12 injections and fatty acids but stop all supplements for 3 months and eventually reintroduce a fraction of them back into the program We eliminate all therapy I spend the next year playing and reading to Mark.
Mark loses his diagnosis!!! Age 8 1/2
My rules for saving money and avoiding crazy treatment ideas: 1. Make three lists 2. If it costs over $1000 force yourself to wait for 6 months 3. Rule out co morbid conditions such as seizure disorders, gastrointestinal disorders, immune deficiency, low thyroid and metabolic issues 4. Look for ways that you can do it yourself. 5. Consider home schooling 6. Form a co-op with other like minded parents 7. Always start one thing at a time and keep a record so you know what is working and what is not working 8. Always do the research yourself and make a list of questions for your doctor
Autism is treatable!!
Steven’s Law
Mark testifies in the senate and changes minds and hearts. He becomes friends with the speaker of the house and helps Steven’s Bill pass into law.
Gretchen Jacobs lobbyist and “best friend to autism” and Mark the day the bill passes the house and the senate.
Mark turns 10 and is completely recovered. He is on a robotics team, plays piano and is at age level for every subject in school He has many friends and a very tender heart. His long term goals include MIT for graduate school, a stint at NASA, running for president and then retiring to be an organic farmer. He is currently working on Ava’s law which is a federal version of Steven’s Law. He believes every kid with autism deserves medical insurance.