As Barbados joins in the observance of Autism Awareness month, one parent has been sharing her experience in dealing with not one, but two children with autism.Dr Delia Samuel, Professor at Century College in Minnesota, USA, has two sons, aged 11 and eight, who are on the autism spectrum.
The US Centre for Disease Control defines autism spectrum disorder as a group of complex disorders of brain development. It’s a lifelong developmental disability for which there is no cure.
Delivering a recent lecture at the Cave Hill Campus of the University of the West Indies, Dr Samuel, who is St Lucian, told the audience that the first child, Earl, was born by emergency Caesarean Section after 22 hours of labour. In addition to autism, he has a speech impediment and began speech and language therapy as well as occupational therapy at age two. However, she describes him as “a genius” who is excellent at Mathematics and competent with computers.
Her second son, Sam, has severe autism and does not speak. He was born by planned C-section and was constantly ill from birth. Dr Samuel recalled her reluctance to accept the fact that her first son was autistic when the school he was attending at the time brought it to her attention. However, after receiving confirmation, she later enrolled him in a special needs school.
“At this stage, I said, ‘Where did this come from?’ I was confused… Then I started feeling guilty. Did I do something wrong? I checked on my pregnancy with Earl. I exercised, I ate very well, I put on an adequate amount of weight. And I would tell the doctors that all the time, and they would tell me, ‘Delia you did nothing wrong. This is not your fault’. Others made me feel responsible, that it was my fault,” she said.
She was more optimistic during her second pregnancy: “I must tell you when I was pregnant with Sam, I had positive thoughts. “This boy [will have] no autism. He is going to be a force to be reckoned with. He was born with even more disabilities. At this point, I said this is a curse. I must be cursed . . . for all the wrong things I have done in my life. God is punishing me for all my sins. But he was punishing my sons, not only me.
“And I became angry. I was angry at God, I was angry at life, I was angry at everybody. Why me? That was my cry. Why me? I think I’m beautiful, I’m intelligent. I have two children [with autism], and why two? I agree, yes, that’s a cross, that’s a journey I could learn something. But I think I could learn something from one. Why both?” she asked.
She disclosed that her marriage also broke down when the children were much younger and she wa
s now a single mom. The early days are challenging for any new parent, but for a parent with an autistic child, those challenges increase exponentially, as Dr Samuel found out. Additionally, she was pursuing a PhD in Mathematics, and recalled being constantly tired, experiencing a rapid turnover of babysitters, and also the toll the children’s illness took on her finances.
“I was angry because I was always broke. Parents of children with special needs are broke. Because we have to take the children to therapy, all of their allergies, we have to buy special food; they are not potty-trained, we have to buy diapers.
“I think one of the hardest things I had to deal with was the fact that I was alone in Minnesota. And I was isolated. I missed adult companionship because when you have two children going to the doctor, you just don’t have the time to socialize,” she said.
It was only after years of internal struggle that Dr Samuel was able to accept her boys’ illness. And with this acceptance, she said, her approach to their care changed and they began to thrive.
“I felt that life had dealt me an unfair hand. What I did not realize is that it could be a winning hand, I just had to play my cards right … And I did it one step at a time, one day at a time … but I did it. I learned to focus not on their disabilities, but on their abilities. I concentrated on the positives in my life, and as I was grateful, I saw even more things to be grateful for. I started relying totally on God,” she said.
Dr Samuel reminded parents of children with autism that “we are not built to break. We have everything we need to take care of these angels”.
Dr Samuel told parents and teachers that autism can be detected in children as early at two years old, and the affected children need ongoing therapy. She however lamented the inadequate expertise and resources to cater for individuals who are affected by this illness.
“Research has shown that one in 50,000 children with autism will reach adulthood each year, and are less likely to be employed. The point is the needs of our children with autism need to be addressed now. Early intervention is key, and that is how these individuals can become contributing members of society. That is how their symptoms can be managed. Early intervention is key and education is key,” Dr Samuel said.