Finding Services and Support in Rural British Columbia
I have been working with children and families for over 25 years, most of that time with families living in Northern Alberta or British Columbia, Canada. Families who live in rural and remote communities experience unique gifts and challenges when raising their children, particularly if that child has extra needs.
A friend of mine willingly shared the story of her family’s journey to get services and support for her grandson. They live in a small town in Northern BC. Note that BC is 1.35 times the size of Texas, but with less than one fifth of the population.
This is her story
“Where I work I get to see lots of children and do screening on children so I knew early on that my grandson Sam was not hearing as he should be. This was a hard conversation to have with my daughter. When Sam was five months old, my daughter took him to the doctor. The doctor snapped his fingers behind his head and Sam didn’t respond. The doctor said he wanted the baby to have a hearing test. My daughter came home and told me what the doctor said. She then snapped her fingers and he turned to look at her so she said, “See, he’s not deaf!” We then sat on the floor for about half an hour and I showed her how when you move in front of Sam, he would respond, but if I was behind him, he would not respond. It took a long time but she finally agreed we should go see someone. At that time the closest pediatric ENT was in Vancouver, which is at least a full day of travel. It was also before we had a Northern Health Bus that went down there. My daughter was a single mother of three and I was a single mother with a young one still at home so we had to look at transportation, child minding, meals, and accommodation costs.
We had a doctor in a closer, larger center where we go for medical treatment and he sent in a referral but said it would take anywhere from 6-18 months. This was in February. But the center took him as soon as possible; because of his age, the longer we leave it the worse off it could be. So we went to Vancouver in May. Between February and May we were back and forth five times for audiometric testing, and to the doctor and the health center which is a two hour drive each way on winter roads.
I was glad I knew what to look for because my daughter didn’t really and no one else in our small town did either. We went to Vancouver and stayed in a room attached to the hospital, it was really nice and we just walked down the hall to the appointments. My daughter took Sam to the pediatric ENT and he said there was nothing wrong with him, so my daughter put on her coat and was ready to go home. We needed to get the okay from this pediatric ENT to get ABR testing. I said during the pressure tests at the health center he had flatlined, so the ENT did a pressure test, and again he flatlined. The next day we got the ABR. This test was quite an ordeal as they put him to sleep. We finally got in to see another pediatric ENT and he took one look in my grandson’s ears and said “didn’t they see the wax build up in these ears?” He removed a lot of wax but Sam flatlined on the pressure tests.
They then put him on a waitlist for tubes, again predicting a 6-18 month wait. Thankfully, he got in sooner because of his age. Once he had his tubes in it was a night and day difference in his gross motor and language skills. He could finally sit up at nine months of age. He then started to stand and when he stood up, he wasn’t falling over. If we had waited any longer to get the tubes, there could have been even more delays.
Over the next couple years, Sam had three sets of tubes put in, as they would often fall out or got really blocked up. We went every few weeks to the health center to check his hearing. This is a two hour drive each way and my daughter has two other children and she does not have a car, so finding a ride and care for the other two was always a challenge. The doctor showed me how to pull the wax from the ear so we could do this in our own community.
This has been a really long haul for all of us. His hearing is classified as variable, it is a mild to moderate loss normally but if he has a cold it goes to moderate to severe. My grandson also has asthma. My daughter accepts that he has a hearing loss but has a hard time accepting that it can be as hard or as much of a loss as it is at times. His father does not believe there is an issue: to him there is no hearing loss, and he thinks if we just didn’t give into him he would listen better. This is a problem when the hearing drops. Sam is five now, and gets frustrated when people don’t understand him and he has started to stutter because he has to repeat himself so much.
Last year, Sam was in kindergarten. There are not a lot of services for kindergarten kids, at least up here. They put him in school and “just wanted to see how he would do.” He basically lost a year of development. When in kindergarten, you cannot get services from Health because he is not eligible over the age of five.
Finally, in March of 2010, in grade one, they asked to see his audiogram. In grade one there is a speech support worker. We don’t have a speech therapist here, but D does not qualify for services yet. When a child is a preschooler, we have speech come from the child development center, but they only come up twice a month and only between March through to October or November, depending on the roads and weather.
Also people sometimes interpret his loss as ‘selective hearing loss.’ Sometimes when he was doing well, my daughter did not always follow-up on appointments because it was such a long way to go and she thought, “Now he is doing better—why do I need to do all that.” My daughter never wanted him to have any problems as a baby. She feels guilt that maybe his hearing loss happened because of something she did before he was born.
There are definite challenges and advantages in a small town. There is great family support. The job I do in this small town gives me opportunities to be involved that I would not get otherwise; I get to go to some specific training about hearing loss that I can use in helping others, too. In a small town more people know you and understand. Before kindergarten, the principal knew our family. The kindergarten teacher knew Sam’s family and had taught his older brother and sister. There was more of a connection because they all had the same teacher. Having a connection makes is easier to talk about what is going on. They don’t think twice about calling me at work because they know I will be there right away. I work across town but ‘across town’ is ten minutes. The kids can spend more time outside and in more activities. It is good for them.
I know a family who left town when they had a child with extra needs; they wanted to get specialized help in the city but they came back after a year or two and said life is better here. I agree.” ~