Pamela Chan, BCFamily.ca
See Part 1: Every Child is a Different Type of Flower
When our twins were 18 months old, we moved from Yaletown in Vancouver to Coquitlam in the Tri-Cities area. Compared to Vancouver, in these more affordable outlying cities there are large numbers of young families who have children with special needs. Many are waiting much longer for services compared to the minimal wait times we experienced in Vancouver. We were quickly moved over to the Share programme because we were already in the system in Vancouver; however, for speech language services we were told that the average wait time would be two years. This wait time was much longer than in Vancouver or cities like North Vancouver! I began to wonder if the early – and very critical – therapy intervention that both of my twins received would have happened if our children were born in Coquitlam.
Before my children could start speech language services in Coquitlam, we were invited to join a Hanen programme. This is a group class where parents are given skills to help support their children’s language development. There wasn’t enough space in the first class that was formed. A few weeks later I was able to join another group. This was my first opportunity to meet other parents of children who had developmental delays.
While my children were discharged from the IDP programme at age three, we continue to use special services in the area. Our enrollment in IDP in Vancouver ensured that we were transferred to a consultant here and then referred again to another public health programme. We were then able to receive a full assessment before a specialist (with a PhD) moved to another jurisdiction. Her position hasn’t been filled due to budget constraints. Families with young children in the Tri-Cities are currently unable to receive similar assessment services. We were invited to join group classes to support and help parents and have had another consultant visit us in our home.
* We live in a time when there are many promising programmes to support children with special needs. Parents with a child who has needs but no services can consider selling or renting their home and moving to an area where the wait lists are shorter. IDP specialists will tell you where the best areas are for wait times. Early intervention support is critical.
* A talented GP is an important support and ensures that your child will be assessed and referred promptly to specialists. It is hard to find a GP who has space in his/her practice these days but it isn’t impossible. When a family moves and leaves a practice, this is an opportunity to call in and say that you are aware that Family X is moving. At a clinic where they don’t keep wait lists, this could be an opportunity to get your feet in the door. (Hands up here at BCFamily because that’s how we did it.) Make talk about finding a good GP a priority. There are friends and colleagues who can refer you to good GPs who are accepting patients.
* There are talented pediatricians all over the Lower Mainland and province. Here at BCFamily we love the PERTH team (as they are known at BC Women’s and Children). You will need a referral from your GP to see a pediatrician.
* Group programmes that support parents help a lot. The Hanen programme – developed in Toronto – is a strong example of this type of support. Politicians, bureaucrats and health professionals need to look at increasing funding for specialists to run daytime and evening programmes for parents – especially in areas where there are long wait lists for individual appointments.
* The benefits of early intervention outweigh the cost. The needs of children don’t go away and take on new complexities during the school years. Some vulnerabilities that are present at the start of a child’s K-12 schooling cannot be eliminated solely through early years support. Continued support is needed. Whether it involves supporting more group programmes, special needs education in public schools or making it a priority to have funding for a health professional or specialist, as a society we have to press for an appropriate level of funding.
* We have a shortage of specialists in specific fields such as speech language therapists and psychologists who work with young children. How can we encourage students in the medical and health services fields to choose under-serviced specializations? How can we encourage professionals who have the right training to choose to work in outlying urban and rural areas?
* The opportunity to meet with other parents who have children with similar challenges is critical. Parents can learn from one another, know that they are not alone and strengthen their belief that their child has an equal right to be respected and supported.
* We often hear the expression “I just want my unborn child to be healthy”. This is an understandable aspiration. Perhaps – though – we are too focussed on our child being “normal”. What does that mean? Most of us have some kind of challenge that we face. Let’s re-frame the commonly held perspective that a medical condition or challenge makes our children flawed.
* Let’s embrace difference and welcome children and their parents into our play groups, Strong Start and educational programmes with an inclusive outlook.
* Let’s champion the work of specialists, teachers and administrators who are working to provide the right kind of support for all types of students. (This is an ongoing topic of concern in public schools.)
* Let’s encourage parents and educators to share their success stories regarding programmes and approaches that best support children with special needs.
* Let’s focus on and connect with the child first and not their special needs.
* The Province of British Columbia could develop a one-stop website where families could find links to all organizations and services available for their children, plus information about upcoming family-focussed community events. These would include workshops, programmes and social activities that help to build community and strengthen the family unit. Currently we’re stuck in 1997, picking up random pamphlets, listening in on conversations and cruising Google for resource information. When you meet teachers and social media experts who come across family resource information well beyond the time when they needed it, you know that there is much room for improvement!
* Let’s advocate for the implementation of higher quality services in British Columbia for children with special needs so that we can become an example of best practice for other countries to follow.
“Mothers of children with disabilities are a missing voice, as they are often absent from mainstream mommy related school or leisure programs due to their children’s therapy and medical appointments and early intervention activities. Mainstream children’s earliest social contacts are often with children whose mothers meet while they are pushing strollers at the park or shops, at neighborhood playgroups/kiddies parties or daycare centers. When the mom of a child with a diagnosis is not included in the mainstream of their community, children with special needs don’t have those early interactions with their mainstream peers.” Duchess Irina, Nigeria
Worldwide children with special needs tend to be invisible in society. Many are not registered at birth and do not receive social services and legal protections that support their survival and future prospects. “You have countries in which having a disabled child is considered bad luck, not only for the child, but for the entire family. Children with disabilities are more likely to not attend school because it is seen as they are unable to learn. Children with disabilities often do not have friends … And, so, children with disabilities often miss out on every aspect of social life.” (Paula Hunt, UNICEF Inclusive Education Consultant)
“By creating environments in which children thrive – establishing family friendly policies, planning to address children’s needs, investing wisely, and collaborating for children’s benefit – we can ensure that the vast majority of children develop optimally and that we keep vulnerability levels low.” (Vulnerability on the EDI report, Human Early Learning Partnership, UBC)
Do you have a child with special needs? What experiences has your child and your family had? You can comment about this posting using the comment function below or by visiting the BC Family Facebook page. Your opinion matters so don’t be shy!
Daily Dish Archives: Pamela Chan, BCfamily.ca
Infant and Development Programme of BC
The State of the World’s Children 2013 – Children With Disabilities
Promoting the Rights of Children With Disabilities (UNICEF)
The Global Plight of Children With Disabilities (New York Times)