My name is Natalie and I am the mother of a profoundly deaf child. His name is Mack he is 6 years old. Mack was born with congenital cytomegalovirus or CMV. CMV is experienced by only 1% of pregnant women. Mack was extremely sick at birth and the prognosis was not good. Mack had typical CMV symptoms having enlarged liver and spleen, small head circumference, under developed brain, low birth weight, seizures, haemophilia and hearing loss. Mack spent his first month in the neonatal unit at PMH. He failed the newborn hearing screening test which was done in hospital. I remember thinking if he only just had a hearing loss I’d be happy because things could have been so much worse. After copious amounts of testing at Australian Hearing and PMH, Mack had a right cochlear implant at 22 months.
After an implant a lot of work and time needs to be given to developing speech by both the speech therapist and the parents.
Mack and I had 4 very intensive and stressful years at Telethon Speech and Hearing (TSH) using the auditory verbal method – no visual cues and no gesture. This was difficult for me as I knew Mack needed those cues even when wearing his ears (right cochlear implant and a hearing aid in the left). Mack has never enjoyed wearing his CI. At first it was a behavioural issue where if you told him off, he would automatically knock his ears off as if to say “I don’t have to hear this”. Then he began burying it in the sandpit, throwing it out the car window and down a storm water drain.
Mack has sound awareness with his cochlear but has not developed speech. He has profound hearing loss in both right and left ears. I went against advice to implant the other ear. I have met many deaf and hard of hearing children. Some really enjoy the hearing world and enjoy using their hearing devices. Mack is not one of them. Mack is a true ‘deafie’ (term of endearment). He enjoys signing and is very visual. Mack is now in year 1 at Mosman Park School for Deaf children where he is with other Deaf children and Deaf role models. He is immersed in Auslan at school which is his first and only language. I am now a full time Auslan student at Tafe.
I have completed cert II and will be going into cert III next semester. I’m hoping to be accepted eventually into the interpreter course. On weekends a deaf role model comes to the house to teach my husband and daughter to sign. Mack still has days of frustration and is extremely physical (punching, kicking, biting etc.) but these days are becoming fewer as his communication and language is developing.
Written by Natalie, Mack’s mother.