Dealing with your child’s diagnosis

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.

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, question what they did not do, or what they did wrong, that might have led to their child’s autism. Ongoing research points to various theories but still no specific causes of autism, so as a mother there probably was nothing that you could have done so don’t let feelings of guilt linger too long. Also, don’t let others make you feel like you are the reason for your child’s autism. Sadly, in TT, in many cases, mothers are made to feel guilty especially by the extended family – it is very important to block out the criticisms and just focus on your child.

Remember to have high expectations for your child and to continue to love your child. A diagnosis is just a label to help you support your child in a more meaningful way. As one advocate said, “Your child is still the same person as before the diagnosis. Being diagnosed simply provides a medical explanation for why your child has a certain set of strengths and weaknesses.”

While receiving a formal diagnosis has a sense of urgency, it is important that you see your child before you see the label. Ultimately, your child just needs you to be loving and supportive; in short, enjoy being a parent. As one parent said, “When you are the parent of someone with autism, the regular give and take is different. You may go days or weeks without eye contact or a smile in your direction, but those hugs and words of love that you do receive are more precious than diamonds."

Dr Radica Mahase is the founder/director of Support Autism T&T