The first time I went to BCFHRC and took part in the PALS group with my son, it was all so new to me. I didn’t know any sign and I didn’t know many of the English words. I was about to leave the room. I wanted to go home. I didn’t; I stayed.
**This story is from our archives – January 2016. Suleiman is now finishing Grade 2.**
Tamana shares her family’s story with assistance from Carolyn Hawrish, LSLS: Later at home I told my husband that I didn’t want to go back because I felt like I didn’t know anything. My husband told me not to be so hard on myself and that it had only been my first time. He convinced me that I should return and give it another try. So I went back, and I kept going back. I learned a little each time and it even started to become fun. Now, 2½ years later, I feel so empowered because I have learned how I can better help my son. I speak Dari, my language from Afghanistan, with Suleiman. My English has also improved and I can now communicate using signs too.
My husband and I moved to Canada from Afghanistan in 2010. There were three of us sisters who married three brothers. We all moved to Surrey together. My sisters also have children. Suleiman was born in 2011 at Surrey Memorial Hospital. He was a healthy boy and we felt so blessed. I first became concerned when by about the age of 2 years, he still wasn’t talking. I brought him to see Dr. Dickson, an Ear Nose and Throat specialist. We also saw audiologist, Fred Matta at the health unit. After testing, they informed us that our son had moderate to severe sensorineural hearing loss. We were devastated.
We had no idea how to help our son learn and communicate. I imagined that my son would never be able to work and that his future was gone. The doctor and audiologist told us that Suleiman needed hearing aids in order to hear and develop his ability to listen and speak. I had a really hard time because, at the age of 2½ and not being able to understand me, I felt like he really wasn’t ready to have the hearing aids on—I stayed home a lot and was feeling depressed and crying all the time. It was so hard to keep the aids on and he refused to wear them—he would remove them and he even put the battery in his mouth—if we went outside he would try to throw the hearing aids in puddles so that I wouldn’t see.
It took a long time and persistence. I really didn’t think it was going to work at all. The only reason that I continued with the hearing aids was because I so wanted to hear his voice. We had to bargain with him to wear them all the time with whatever was going to motivate him; the television, an outing, a favourite toy, candy, whatever it took, I tried everything. I had to put those hearing aids on many, many times every day. I remember one day he removed the hearing aids 10 times in a row. Another thing I tried was putting the hearing aids on and then we went for a walk so that he could get used to listening with the hearing aids—I pointed out sounds. When we returned home, and he had nothing to do, he removed them. It was essential to keep him occupied!
I don’t remember exactly when but, after months and months of this struggle, he finally kept them on! Now he refuses to remove the aids when he goes to bed!!!! We really feel that God changed this in such a big way—I waited so long for the moment that he would just say one word; now he won’t stop talking. It is such a blessing—we communicate about everything!
If I’d known this at the beginning of our journey I would not have believed it. Back then, we also found out that my sister’s son, just a year older than Suleiman also had hearing loss. He too needed to wear hearing aids in order to listen and learn spoken language. It was my sister who introduced me to BCFHRC and let me know that at this Centre, the people would care for our sons and help us learn what we could do to help them. This has been a great opportunity for Suleiman and my family. In my country I’m certain that Suleiman and his cousin would have been called names and the other children would have made fun of them. I now know that in Canada people with hearing loss can do all sorts of things. I have even learned that adults with hearing loss can join parliament and be quite successful and independent. Now I know my son’s future is very bright and he is in good hands with the services offered here.
Since registering with the Centre in May 2014 my family and I have taken part in many of the services that BCFHRC offers including the PALS, VALS and LEAP groups. As I said, at first I felt so lost but gradually I have learned more and more and so has my son! The groups have taught me what I can do at home to promote his learning of language. As Suleiman’s parents we realized how much responsibility we must take in ensuring that he progresses.
Participating in the group programs has encouraged me to create a more structured environment for my son so that he is fully engaged throughout the day. There is a time for playing, a time for reading, a time for everything—now I feel like I know how to manage our daily routine and inspire Suleiman through communicating. I realized that BCFHRC is showing us the path and that it is our responsibility to follow that path for our children. Yes, the amount of work is huge but, we have to be there for Suleiman and not give up. The Centre has helped us but, I definitely feel like the effort is 50:50.
We have also received great in-home individual services. We have sign language instructor and Deaf Mentor Sharon Neufeld come to our home each week. It’s great because Suleiman also sees Sharon at the group program so there is a nice bond there. Sharon has been an incredible help and has taught us that visual communication is a beautiful way to share joy and excitement.
We have also had individual therapy sessions at home. First with Alex Lay, SLP and now with Carolyn Hawrish, AVT. I have seen through these visits that Suleiman is making so much progress! I really see a lot of changes. These sessions have especially helped me with how to cope and to communicate with Suleiman in the times that we are not at the Centre. We have to continually integrate the ideas that the professionals are telling us from week to week into everyday life.
For example, when I go for family visits to my sisters’ homes, I take some of Suleiman’s “homework” (activities that Alex, Sharon and Carolyn have suggested). When I see that the children are misbehaving I put some games on the table and ask them to choose one. Sometimes I just bring play dough. Then they are all occupied and much better behaved. I see that they are more content when they are engaged and have something structured to do. Also Suleiman comes to the kitchen when I’m cooking and we talk and joke around.
When thinking about Suleiman’s future now and his upcoming transition to Kindergarten in September, I feel like we are all in a much better place. My husband has been very involved all along and has recently been taking part in the evening PEER sessions offered by BCFHRC to help us be prepared for Suleiman going to school. I know that he may not be exactly the same as the other children at school. I know he may be behind academically but, with our help, he is getting there. He has learned so much in three languages already! We also know that there are people within the school system who will advocate for Suleiman alongside us.
I would urge any parent whose child is born with hearing loss to educate themselves on what to do with their child. Look for information and know that there is support available to you. Second, if you want your child to learn to speak, be persistent in putting your child’s hearing aids on. Third, spend more time with your child who has special needs. This is so important and made a huge difference in mine and my son’s lives. I spend most of my time with Suleiman. I pay more attention to him and see that besides my daily work, I’m there for him if he needs me. Yes, it takes more time but, it has been worth it.
Our family and friends have been noticing so many changes in Suleiman now. Before they thought he was so quiet. Now they see that he is very talkative, active and intelligent. He has a great sense of humour. Just the other day Suleiman and I were waiting at the bus stop on our way to the Centre. He was telling me about a book that he read involving a rabbit. A passing car stopped in front of us at the traffic light and honked its horn at us. The people inside waved and were signing to us through the window—it is so amazing that we’re able to talk about so many things and with strangers! I was so encouraged and excited and I am looking to the future with pride and optimism!