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She's Going to Recover!
The screaming and tantrums would begin as early as 4:30 am on some mornings. This would continue throughout the day until she would finally pass out with exhaustion. Watching in terror as she bashed her tiny little head off the hard wood floors between bouts of running full speed into walls, doors, furniture and appliances was the norm. We would lose her into staring spells that she simply could not pull out. She was nearly three and couldn’t talk. She only started walking shortly after her 2nd birthday. What was wrong with our beautiful little girl? What were we doing so wrong as parents? My husband and I asked ourselves these two questions over and over again. We were told that she was developmentally delayed and all would be fine with Early Intervention in place– “Just wait it out” was the answer we so often heard.
Shortly after our daughter’s third birthday we received the PDD NOS diagnosis. I refused to believe it. Luckily for all of us, my denial only lasted about a week. We immediately researched possible solutions and anything that might help our daughter.
GF/CF: This was our first change. Like most, I didn't truly understand what else needed to be removed. Glutens hide in so many foods! But I didn't give up. We began to see enormous changes in communication skills. She began using two and three word phrases. She calmed down and tantrums occurred on average for 5 minutes and were fewer and further between. (Later I learned about artificial colors, etc. from Dr. Mumper).
Therapy: We got a prescription from her pediatrician for evaluations for Speech, OT and PT. The therapists suggested all three therapies 2 times per week for ½ hour each.
School: Enrolled her in Child Alert where she also receives OT and PT twice a week.
TSS Wrap Around: We researched wrap around services and found Family Behavioral Resources. She receives 20 hours per week with an at home therapist.
DAN Doctor: Elizabeth Mumper of The Rimland Institute: Tests, labs, more labs and more tests. We removed Soy, complex carbs, began the Feingold diet, removed nearly every aspect of cane sugar. We buy only organic GF/CF/Soy Free foods. We buy our meats and poultry from a farm to ensure there are no hormones or antibiotics in her food. We added a variety of supplements, began anti-fungals (prescription Diflucan). Increased vegetable intake, removed household cleaners and replaced them with all bio-degradable cleaners (laundry, dish soap, bath/body soap…EVERYTHING). I re-learned how to cook to meet her dietary needs. Honestly, Dr. Mumper has identified how to correct her insides so she can recover. I feel as though we owe a great deal of our child’s life to this woman.
It’s not been easy but I know our baby will recover. We’ve seen such immense progress since this past Nov. 2009 and our first visit with Dr. Mumper. My daughter talks to us. She snuggles us. She plays with her sisters and accepts and initiates play with other children. She makes jokes. She sleeps through the night and has just recently started to use the potty. It’s been a year of growth, sacrifice and struggle for our entire family but we have our little girl back. She’s not yet falling at peer markers on evaluations but she has increased over 14 months over the past year. (She evals at 38 months in speech, OT and PT which puts her not quite a full year behind her actual age). I know we’re all going to make it and I know she will have an amazing life.
Believe it or not, I tried to keep this brief. I have so much more to say and so much more I would love to share. I invite any questions anyone may have – we are all in this together and knowledge truly is power.
FYI: we live in PA which is a fantastic state when it comes to treating autism. My daughter is able to receive Medical Assistance - which covers her therapies (in house and at the therapy center) and evals. Her recovery is a combined effort and I do not believe one aspect would be as successful without all others.