In honour of #betterspeechandhearing month, I wanted to share the story behind the passion for improved access to resources for children that are Deaf or Hard of Hearing, and the advocacy for better hearing health; our Em.
Our sweet Em was born in December 2012. When Em reached about 10 months we started to have some suspicions about her ability to hear. She wasn’t looking for sounds and didn’t respond to her name. As first time parents, we thought that maybe she was just a busy baby and ignoring us. Along came her first birthday and we still had our doubts. We booked in an appointment to see our family doctor, who referred us to a pediatrician, who booked us an appointment for a hearing screen. Finally on April 17th, 2014 at 16 months old, Em received her diagnosis of a moderately-severe, bilateral, sensorineural, hearing loss. Meaning that her level of loss affects both ears in her cochlear, and was in the moderately-severe decibel range. In order for her to hear something it had to be pretty loud, and even then it would still be muffled and not clear.
At the time of her diagnosis we had just bought our first home, renovated it, and started a business. Now we had the unexpected expense to pay for her hearing aids, which cost about $3,000. Saskatchewan Health DOES NOT cover any costs for hearing health, so we ended up paying the full $3,000 out of pocket.
We reached out to Saskatchewan Deaf and Hard of Hearing Services looking for funding for her hearing aids. They provided us with something much better; a language to communicate with Em regardless of her hearing level. They introduced us to some members of the Deaf community and told us that our girl would succeed with American Sign Language. Unsure of what path Em wanted to take, we started signing at home with the basics from Baby Signing Time. After realizing that she wanted to utilize ASL, we later took 4 ASL night classes with Saskatchewan Deaf and Hard of Hearing to expand our vocabulary to continue our communication with Em. We have never looked back on our decision to sign with her, and are so grateful that it has allowed us to truly know our little girl.
Em received her first pair of hearing aids on July 11th 2014. We set up early intervention programming with Wascana Rehab shortly after. However, we were unable to fully access their programs until February 2015 because of the waitlist, 9 MONTHS after her diagnosis. I would call every few months to see where she was on the list and remind the staff that she was missing out on critical time for language development every month that passed. I was always told “she’s top priority” or “we’re doing all that we can” every time I called, yet it still took them 9 MONTHS to get her a speech therapist. I had called several private therapists, but no one would take her so little. So our girl missed out on a critical period for her speech development.
When we finally started speech therapy, we attended weekly with Mr. L in tow with little gain. Considering the amount of time we had spent in speech therapy week after week, we were still not seeing the improvement expected for her speech. In January 2016, Em began going to the Communication Preschool and was released from Wascana’s services. Just before her third birthday we were also finally able to get a better look at Em’s hearing loss, and discovered that she actually had a severe-profound loss and the hearing aids that she had were unable to provide the amount of amplification she needed.
Essentially Em had been living the first 3 years of her life in silence. From 0-3 years is the optimal time for language development, and a critical period to do so. Despite dangerous advice from professionals to stop signing with her because “that was the cause of her speech delay”, we continued and were able to ease some of the frustrations that she had while she learned to speak. COMMUNICATION DOES NOT DELAY COMMUNICATION. We had made it clear to friends and family since the day we met with Saskatchewan Deaf and Hard of Hearing services, that we didn’t care if she spoke or if she signed. We just wanted to be able to communicate with her in a language she would understand.
So 18 months after diagnosis, a new set of hearing aids were needed, this time at a price tag of $5,000 almost double the original’s. We applied to the Elk’s Children Fund, and they graciously paid for them on our behalf. Since then we have been volunteering with the Elk’s at various events and campaigns to help them raise awareness for the great work that they do.
Every 6 months Em goes for a hearing test and new molds. The test is $45, and the molds are $80 a piece, so $160 for the pair. Again, Saskatchewan DOES NOT COVER anything related to hearing health. We once left the clinic with a $300 bill between hearing tests for all three kids, and molds.
In April 2016, we began seeing an Auditory Verbal Therapist in hopes that it would help Em improve her speech skills. We attended therapy about every 2 weeks for about 3 months, when our appointments were dropped because I refused to stop signing with her. Since then, we have tried numerous times to reconnect with the AVT to resume services, but have been unable to do so.
Em is now a happy 6 year old and has recently expressed interest in the cochlear implant, so we have been busy with appointments to prepare for them. We know that this will also be a challenging road for her, as there are still professionals giving dangerous advice to not use sign with deaf or hard of hearing children, especially those with the implant. If we had taken the advice given to us, we would not have our intelligent, thoughtful, little girl. By the time Emily was 2.5 she recognized 80% of the alphabet in print, knew all of them in ASL, wrote several letters, and could write her name along with a handful of other family names. She has always loved books and was reading short sentences by the time she entered Kindergarten. Because she has had access to ASL since her diagnosis, she is on par with her peers academically.
Em struggles with relationships, as she signs too well for her peers, yet speaks to poorly for them to understand. It is heartbreaking as a parent to watch her struggle with something that we can’t always help her with. We work diligently with her teachers to help her learn coping strategies and techniques for when there is a breakdown in communication, but she still gets frustrated trying to maintain relationships. We believe this is her motivation to receive the cochlear implant; she wants to be “like everyone else”.