NANA SAYS EARLY DIAGNOSIS OF AUTISM THROUGH RESEARCH AT THE HOSPITAL FOR SICK CHILDREN

Having a special needs child has never been easy for parents. Watching the development of your preschooler veer off balance to other children brings  a new realization that something is different when a child is diagnosed with autism or in the Autism Spectrum Disorder category. This week a study was revealed by doctors at the Hospital for Sick Children in Toronto that shed hope on earlier diagnosis of children. Studying the genome and the mutations in the genes of over 3000 people from North America and Europe, it would be possible to know which children are at risk. Even hope to find these children prenatally.  It was quoted that the average child is not diagnosed until age 4 but in my experience there are many children that are found earlier. The issue of course is to begin treatment and support to both the child and parents. In our area there is Early Intervention Services offering physiotherapy, occupational therapy, social work, speech language and medical intervention when needed. Support that comes to the home. For parents to be part of the team that supports their child as well as connecting with other parents dealing with their complexities is vital. Finding ways to advocate early for all those supports should become less work and more of a realization of what is really needed. Parents who go for genetic testing prenatally will be better prepared to make difficult decisions about their children. What is important to me is the help available for Canadian couples facing this tough diagnosis to know that children with autism can have a future and the hope of better acceptance in the larger population.

NANA SAYS A SPECIAL NEEDS DIAGNOSIS DOES NOT NEED TO BE DEVASTATING

When parents of a newborn are given a diagnosis of down syndrome, chromosomal abnormality or any other complex diagnosis, it can be devastating initially. Supportive counselling, linkages to community agencies and family involvement all help with the situation. Many children can have rewarding lives within family settings. For many parents, however, they need to grieve not having the normal child to accepting and loving the special needs child is a painful process. Their lives mean needing to contend with all the clinicians that may be in their world: trips to a Children's Hospital like the Hospital for Sick Children in Toronto or intense involvement with community agencies that offer services such as speech language, occupational therapy, physiotherapy, social work, behaviour management, sensory integration and therapies like art, music, dance. Special Education classes at school will be the norm along with some integration into regular classes. Connecting with other parents and peer support groups are equally and sometimes more beneficial to parents. Professionals need to know when to back off and allow the family some normal privacy. Expertise means assessing the strengths of the parents and incorporating them into the team.The diagnosis will become less devastating when any society removes the stigma of seeing developmentally challenged individuals as less worthy. We embrace our elderly who become cognitively impaired so the same acceptance of the little ones needs to happen. If you know parents who are facing such a dilemma, reach out and offer hope. Congratulate them on the birth of their baby. But be willing to offer the additional support they may need. Perhaps babysitting the older children while a parent goes to a doctor's appointment. It will not be an easy journey but can be made manageable if parents do not feel alone and isolated like the previous generations who had to manage alone or send their child to an institution. Actually, Special Needs people have a lot to offer us. With events like the Special Olympics, the achievements are amazing. If you spend time in their world, you can learn about yourself and will be loved unconditionally. Do you know parents struggling with a new diagnosis? Is there something you can do to help them? Do you have Special Needs people in your life? Tell me your stories.