DR RADICA MAHASE
“NEW year doesn’t mean anything in my world nah! I have a child with special needs and if it doesn’t impact on him in some way then it doesn’t make any difference to my life. My life is my child and everything I do is to make his life better.
"When a new year starts and he is still in the exact same place, without anything new happening in his life, then I just feel hopeless. And I start to think, it’s a new year but what’s there for him. It’s not good to start the year feeling hopeless.”
These were the words of single mother Tricia, whose son Daniel is 15 years old and low functioning on the autism spectrum. Daniel has been home for most of his life as Tricia was unable to find a school willing to work with his special needs. When she did find a school she could not afford to pay the school fee which was $8,000 a term. Tricia relies heavily on her parents to help her with Daniel when she goes to work at a grocery nearby. Sometimes, during her lunch break, if the grocery isn’t too busy she would go home to check on him and let her parents get a short break.
Tricia’s words reflect the thinking of many other parents of children with special needs. To many parents, a new year brings a sense of anticipation along with fear and hopelessness. Another single mother, Aliya said that she was hoping it would be a better year for her child.
“My daughter Anna had a very rough time last year. She kept getting meltdowns and we weren’t sure what was causing it. We think it was because she kept getting headaches but we were never sure as she doesn’t speak. It was a very rough year for her and when she is not happy I always worry. How can I be comfortable if my child is not happy?”
A new year usually brings hope and special needs parents have the same hope for their children as parents of "normal" kids. However, when the year changes but there are no real changes in opportunities, education, health services, social services, etc, the path ahead seems daunting and hopeless. Special needs parents need to constantly remind themselves that they do have a superpower, that they have been their child’s main hope all these years and no matter what is missing in our country, they cannot give up hope; that no one else can or will do what they do for their child. Here are five affirmations for special needs parents:
I am my child’s biggest hero. Let the fact that you are your child’s main advocate, the one who fights everyday to make his/her life a better one, give you the strength to wake up every morning and take on the world. You are the one who knows your child best.
I will not apologise for my child’s special needs. I love my child, special needs and all. Therefore, I will ignore those who have negative things to say about my child or correct them as far as possible, without creating unnecessary stress for myself or my child. I will continue to be proud of my child and if anyone has a problem then they can move along.
My child has something wonderful to contribute to this world. My child is unique and beautiful in his/her own way and s/he brings joy to this world. With every smile, my child lights up this world. I know the positive impact my child has on this world and I will continue to encourage my child to shine in his or her own way.
In the midst of all the difficult times I will remain positive. There are good days and there are bad days for both me and my child. I will celebrate the good days and not let the bad days get me down for too long. Even in the midst of all the negativities I will remain positive for I believe that even a small candle can brighten up a room.
I will focus on what my child can do. I will appreciate and celebrate every little thing that my child can do and I will help him/her to learn new things. I will do my best to create opportunities for my child to develop in every way possible, with whatever limited resources I have.
Dr Radica Mahase is founder/director, Support Autism T&T