When we first suspected something might be wrong with Madeline’s speech when she just over two years old, we had her assessed and as a result, she attended speech therapy.
Madeline’s speech was improving and the speech therapist thought everything was fine. As part of the therapy, hearing is routinely tested. After a first inconclusive test at a small hospital, we were encouraged to schedule another test in 6 months. Instead, we requested a referral to a specialized center. Only there did an audiologist diagnose our child with a mild to moderately severe sensorineural hearing loss when Madeline was just over two and a half years old. We were shocked and we felt guilty that we had not been able to help her sooner, and deeply disappointed that Madeline’s hearing loss had not been diagnosed sooner.
“We were shocked and we felt guilty that we had not been able to help her sooner…”
Also, we felt sad and worried over how Madeline would somehow not be able to live a “normal” life.
At first, there was no time to deal with anything other than seeing speech therapists, social workers, audiologists, geneticists, pediatricians, and ENTs. Madeline also had many medical tests: ultrasounds, eye appointments, and blood work. Anything that possibly could be related to when her hearing was being developed in utero was tested to make sure there were no other problems. Looking back it was overwhelming and we did not realize it was taking a toll.
The ENT doctor said it is impossible to know what caused Madeline’s hearing loss. “Your seat belt could have been too tight when pregnant; no point in dwelling on the cause.” Although the comment was ridiculous, his point was well taken. I decided to educate myself on hearing loss and types of treatments available. Wanting to learn more about hearing loss, I did research online but also went to the medical library attached to the University to read up on newly published articles. I even remember reading about research on cochlear hair cell regeneration.
Madeline received her first set of hearing aids when she was two years and 10 months old. The main job was simply keeping the aids in. Madeline was pretty good and only occasionally she would take them out. I did not make a big deal when she removed them and I simply put them back in for her. Even though she did not do it often, I still could end up searching the entire house or yard for parts of the hearing aid. On the bright side, I am now pretty good at finding small objects in the grass.
Luckily, there are now other options available for toddlers such as integrated systems as well as coverings (Ear Gears or similar).
When Madeline got her first FM at age three, we were told to use it all the time for maximum benefit. Back then, the boom microphone was much better than the lapel one. So I wore the boom mic. For the first month, I got terrible headaches until I got used to the mic.
I would encourage parents to have their children reach out to other hard of hearing or deaf children to ask their questions. They will listen to their peers but not necessarily their parents. That is one of the reasons that the Phonak teenage advisory board is such a fantastic idea.
We took it as a good sign that Madeline, who was not even 18 at the time, had enough confidence to leave home and go to another city to attend university. It is fantastic that she feels confident to handle things on her own.
Read more about Linda’s daughter Maddy here!