DR RADICA MAHASE
TOO often I would receive phone calls from individuals saying, “I think my neighbour’s child has autism but his parents are saying nothing is wrong with him,” or “My niece has all the signs of autism but my brother is denying it and refuse to take her to get assessed.”
Recognising that your child may have some kind of special needs is one thing, accepting it and dealing with it is another. Generally, most parents go through stages before they reach the point where they can truly embrace their child with all his or her special needs.
Initially, many parents tend to be in denial. In many cases, before a child is formally assessed, parents recognise signs that the child is not developing or meeting required milestones but they make all kinds of excuses for why this is so. The common one in TT is with speech development. Parents recognise that their children are not speaking at the level required and in the case of the boy child, the common excuse is, "it’s okay, boys take longer to speak than girls."
An autism parent Jenelle noted, “By age four my son was still only saying a few words and not all the time. To be honest, I knew that something was not right but I was just refusing to accept it. It took me another two years to accept that my child was not speaking as he should and to recognise the other signs that were always there – he would hold his ear whenever there was noise and he would hit his head against the wall. I look back and feel so sad that I was denying all the things that I saw and that I took so long to get him assessed.”
Another stage in the acceptance process is the blame game. Parents, especially mothers, tend to blame themselves and feel guilty that their child is not meeting milestones. They wonder what they have done wrong; what they could have done differently; did they miss something during pregnancy?
One mother Jane stated, “At first I blamed myself totally and my husband and the extended family all blamed me. One relative told me that if I was more active when I was pregnant, then my child would have been healthier. Another person told me that it is the mother’s responsibility to make sure that she brings a healthy child into this world and that I had failed my child. I believed them all and I told myself that it was all my fault. It took a year of counselling for me to stop blaming myself.”
Many parents go through various stages of anger, frustration and depression at different times. Autism dad James noted, “I was angry with God. I didn’t understand why He didn’t give me a ‘normal’ child. I was angry that my child had to go through this. I kept asking God why He sent my son here to suffer. I was angry with my wife and I blamed her for my son’s special needs. I was angry with my friends because they had ‘normal’ children. I went from anger to depression. I was sad – what kind of life would my child have? How would people treat him, who will love him?”
Once parents reach the stage of acceptance, they start to look at what their children can do rather than what they cannot do. They start to celebrate every single milestone, no matter how small and no matter how late they occur and they become empowered in many ways. Stacy, an autism mom noted, “I realised that I was stronger than I thought. I was ready to take on the world just so that my child will be happy. I would defend my child and tell off people who said anything about her. Once I accepted her special needs completely, I became fearless and I realised that is what my daughter needed from me all along.”
For all the parents who know that "something might be wrong" but are having a hard time accepting it and dealing with it, remember that the earlier you accept it and the earlier you get help for your child, you are giving your child the opportunity to live a more fulfilling life. Also remember, you’re not the first and you will not be the last parent with a child with special needs. And most importantly, remember, "Normal is an illusion. What is normal for the spider is chaos for the fly.” (Morticia Adams)
Dr Radica Mahase is the founder/director of Support Autism T&T