Rachel’s Story

 

	Trevor’s Story
	Trevor Ryan McNamara was born March 18, 1992 and was the product of a healthy pregnancy.  Trevor’s life started out on a bumpy course.  He was quite jaundiced, which breastfeeding did not eliminate, and had to return to the hospital daily for bilirubin checks.  At nine days, he was hospitalized for the first time with a fever of 102 degrees.  After many tests and IV antibiotics, the doctors decided he had a viral infection, like a viral and was discharged.
At six months, when Trevor received his DPT immunizations, he had an allergic reaction to the vaccine.  He was screaming non-stop for almost eight hours.  His temperature hit 105 degrees before we got him to the hospital.  A spinal tap to rule out meningitis, etc. and nothing was found – it was decided the vaccine was responsible.  Trevor then developed recurring otitis media, otherwise know as middle ear infections.  There was never more than 3 to 4 days where he was well, and then it was back to fever and pain and more antibiotics.  Trevor sat up at five months, and crawled at eight months; not horribly late, but enough to bother his dad and I.  However, none of the doctors were alarmed. Trevor finally was walking at 15 months, but by this time, had also developed severe food allergies.  We were terrified something was really wrong – of course the doctors still found nothing.  At eighteen months, Trevor had his first set of ear tubes to help with drainage and keep infections down.  He still had very little recognizable speech, not even the normal babbling you would hear when he was approaching his first year.  The doctors all said, “He hasn’t been able to hear properly for the first year and a half – the speech will catch up.  Once again the doctor’s predications never happened.  He reached his second birthday with out much more than a dada, or mama.  He was out of touch socially, preferring to play with toys by himself and it wasn’t typical play by any means.  He developed a weird habit of throwing his toys in the air and watching them fall, sometimes for hours.  He would sit in a corner, or under a table, not playing or communicating with anyone.  By his third birthday, we knew something was dreadfully wrong, not real speech form him, and completely anti-social.  He didn’t like to be hugged or touched, and the crying and screaming fits were heartbreaking.  We went from pediatrician to pediatrician looking for an answer to the ear infections, feeding problems and weird behavior.  We heard every dx from cystic fibrosis to colon cancer….not a word about autism.   We took Trevor to the UT developmental clinic where we first received his formal dx of PDD_NOS (Pervasive Developmental Disorder, Not Otherwise Specified).  We started to search the internet, desperately looking for a cure, or at least something to help.  There is still no definitive cause of autism.  There are no cures or prescription drugs for autism, only intense speech therapy, behavioral therapy, occupational and occasionally physical therapy.  Trevor has another disorder called global hypotonia, which translated into overall muscle weakness.  Muscle biopsy and EMG were performed by doctors with inconclusive results.  Trevor deals with his physical limitations on a daily basis, once again, not cure in sight.  Trevor was enrolled in a public school program for children with disabilities, but little progress occurred in his speech and behavior.  We enrolled him in The Westview School in 1997.  Although way beyond our budget, strained well into the red with speech and occupational therapy 4 days a week,  Trevor’s speech and language absolutely blossomed under the care of their staff.  Today Trevor is enrolled in public school and wishes other kids would play with him.  He still receives speech and language therapy, and is in need of occupational therapy to address his muscle weakness and fine motor skill deficits.  Although his academic strengths are reading and spelling specifically, his comprehension, math and spatial abilities are profoundly limited.  His needs for specialized therapy and training are ongoing.