DR RADICA MAHASE
Lisa Jo Rudy, autism advocate and author, said, “Many parents feel overwhelmed with sadness when their child is diagnosed with autism. Often, that grief is connected with a sense of loss.
While their child, of course, is still a part of their lives, some parents feel that they have lost the child they expected or the child they thought they had. Others are saddened by the realisation that their child with autism will almost certainly live their entire lives with a disability. Still, others are grieved by the thought they will not be able to give their spouse or parents the gift of a "perfect" child or grandchild.”
Dealing with your child’s diagnosis, whether it is autism or any other special needs/disabilities, can be very difficult at first. In addition to being overwhelmed and feeling a sense of loss, many parents and caregivers in Trinidad and Tobago panic, mainly because of the lack of a supportive healthcare system. After diagnosis, parents/caregivers are left to "figure it out" on their own. There are no mandatory counselling services, or extended support in place to help parents to understand the diagnosis much less to guide them in accessing resources to help their child. Here are some guidelines for parents/caregivers.
Sop thinking about what your mother and grandfather and uncle and neighbour and the whole village would say or what they would think about your child. Instead, focus fully on your child.
A diagnosis in TT means that you now have to become your child’s advocate. That means educating yourself – find out everything that you need to know about autism, to help you care for your child. Reach out to those who might be able to give you relevant information – other autism parents/caregivers and local NGOs.
Don’t let a diagnosis change the way in which you look at your child. Too often, after the child is diagnosed, parent see the child as a burden; they almost immediately start to think "life just got harder" and "how am I supposed to take care of a child who is not normal." Parents start to worry about the future and how they will manage and they forget that the child is still that same child that they had loved all along.
[caption id="attachment_929348" align="alignnone" width="1024"] Don't isolate your other children. - courtesy Sataish Rampersad[/caption]
If you have other children don’t isolate them. Explain the diagnosis in a way that they would understand and let them become involved in their sibling’s life. I remember when my nephew was diagnosed we made every effort to explain to his six-year-old sister. Every time she asked why he wasn’t doing things that she did, we would tell her that he was special and different and that was okay. As she got older we would explain more and more to her and we made sure that she was there for his various therapies, etc, – she was always a part of his life, no matter how different it was from hers. Give your other children a chance to become your support system.
Don’t blame yourself. Many parents, especially mothers, que
