Lessons learnt as an autism dad

DR RADICA MAHASE

“My autistic son has changed my life! Everything that I thought was important seem so insignificant now. I have learnt to think outside of the box. The day he was born I became a parent, but the day he was diagnosed, that day I became a real father.” John is just one of the many fathers who are raising children who are diagnosed with autism spectrum disorder and other special needs/disabilities in Trinidad and Tobago.

He is also one of the many fathers who were acknowledged when our country celebrated International Men’s Day last Saturday. He and four other autism dads shared what they have learnt on their journey so far:

"Treasure your close friends, the ones who really understand you," said Jason. "People come and go in your life, but when you become an autism dad, it’s much more difficult to keep friends. That saying, 'you don’t know until you’re in it' is true – many friends don’t understand the whole autism thing.

"I had to get rid of one friend who kept telling me that his pastor can 'cure' my child’s autism.

"Another one insisted, 'Your wife can handle the boy, let’s go for a drink.'

"In the end, the one or two close friends who make the effort to understand and support you in whatever ways they can – just maybe listen to you go on and on about therapy sessions or the little things your child does – those are the ones you keep close."

"Learn to be flexible and open to anything," said Asif. "When my wife was pregnant, I was excited; I had real big plans. Our child would attend this school, we would travel to these places, do all these things. I had all these great ideas of things we would do.

"By the time my daughter turned five years old, mainly financial problems and her level of development forced me to reassess all my plans.

"As an autism dad you want to do all the grand things, and maybe you still can do them, but you learn that you have to set new timelines, change your plans to accommodate an autistic child, maybe move at a slower pace. I had to constantly update my plans, and reassess what I was doing and wanted to do so that I could be the best dad possible, the dad that she needed.

"It took me a long time to accept that but once I became flexible, I was able to enjoy being a father to this amazing little girl."

"Support your child fully while managing your expectations." said Kiran. "I learnt very soon that I had to stop expecting my child to do all the things that I wanted him to do.

"I am a big cricket fan and played cricket in school. From the time I know we were having a boy; I was ready to make him a cricketer.

"Then my son was diagnosed with cerebral palsy and autism and I was heartbroken because he would not be able to play cricket. All my dreams for my child were crushed.

"But then I saw how much he loves art and how creative he is with his drawings, and I supported him fully. I am so proud of him. He may not be the cricketer I hoped for, but I am in awe of his creativity and I am happy that he is doing something that makes him happy. I have learnt to support him in anything that he’s interested in, even the things that he’s not good at."

"Never give up, not even on the toughest days," said Peter. "There were so many days when I considered just leaving my family and going somewhere far away.

"There are the days when I feel so helpless because my daughter is having constant meltdowns and I can’t help her. There are days when I feel overwhelmed because I need to pay the speech therapist, or we had to miss occupational therapy because we didn’t have the money this week.

"You have to reach inside and find the strength to wake up in the morning and keep going, because you child needs you. You have to make sure that you don’t become one of those irresponsible fathers, the ones who just 'babysit' their children. or the ones who feel that their role is only to contribute financially or the ones who don’t even do that.

"Stick through the rough days no matter what and believe that better days will come."

"Stand up for your child," said John. "Fight for your child and make sure that you are his biggest defender.

"There are many cruel people in this world; too many people are so nasty towards children with disabilities.

"I have learnt to open my mouth and educate people or, if they refused to be educated, to tell them off. I have learnt to stand up for him so that people will not put him down.

"As a father, it’s not about being ‘big and bad,’ it’s about not allowing people to disrespect your child and your family. So stand up for your child and protect your child."

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