Dear Chairman Burton and distinguished members of the Committee, thank you for allowing me to testify and represent the parents of this nation who want to share with you the remarkable results of Hyperbaric Oxygen Therapy for their children with Autism and brain damage.
When my daughter, Jessica, was born in 1973 her brain was damaged from loss of blood during delivery through a slit in the umbilical cord. She was born dead, resuscitated and given ice cold blood transfusions as was I. As her damaged brain swelled the seizures began.
In those days babies like Jessica went to institutions, not home with their parents. In spite of the resistance from hospital staff, I chose to take her home. The Federal Law would not be passed for another two years even allowing a child like Jessica into the school system. We had many battles ahead of us and today I am fighting for the babies yet to be born so that they and their families are spared what we had to endure and are still enduring.
I gave up my teaching career to care for her. When she was four years old I gave birth to healthy, gifted twin girls. Divorce is much higher in families with children with disabilities and only the strong marriages survive. Mine did not. The girls and I were forced to go on SSI, welfare, food stamps and Medicaid. It was frustrating and degrading to have two college degrees and to be living below the poverty level and accepting government help with no alternatives. Disabilities in a family are devastating not only emotionally, but financially which in turn makes more people dependent on the government.
This all could have been prevented for our family for just $3. 58 an hour's worth of oxygen. Loss of blood is one of the non-approved conditions for treatment with Hyperbaric Oxygen Therapy (HBO). I strongly believe now that if she had been treated with HBO immediately, she may have gone home perfectly normal. Instead I was sent home with a seizuring, spastic, screaming infant with no referral for any therapy or for any support.
In 1979, when Jessica was six years old and the twins were two, I started a small support group for parents whose children had disabilities. We shared our hopes and sorrows and most of all we supported each other and knew we were no longer alone.
We discovered we had power too. When a mother, Donna, with a two year old son who was blind and needed leg surgery called us because the hospital wouldn't let parents stay overnight, we met with the hospital administration and had the policy changed. She slept on a cot in her son's room that night.
We grew in strength and number. New mothers knew nothing about the services we did, so a newsletter "MUMS Matchmaker" was developed to get information out to those who couldn't attend meetings. Thousands of parents now had a voice to share their emotions, problems and helpful solutions. Milwaukee Children's hospital reestablished the Parent Rooms on each floor because of our editorial complaint in the MUMS newsletter.
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