Georgette Sands (name changed) never expected to get pregnant at age 22, but when she did, she and her boyfriend dealt with it. The couple who were in a committed relationship, got married. When their son Adian was born, he weighed seven pounds, 14 ounces. They fell in love with their perfect little boy instantly.
The first-time mother documented everything he did. As they celebrated his first birthday it was brought to her attention that her son whose hyphenated name means pleasure-given and favored with God, wasn't walking. She paid no attention. She'd been told that boys were different and that they didn't walk until they were like 15 months old. Besides, he'd done everything else rather quickly, so she wasn't too concerned that he hadn't walked as yet.
At 13 months, Sands' son started walking then running. She breathed a sigh of relief. He was okay. But she mentally noted that his pediatrician kept asking about his vocabulary, which had not progressed beyond mama and dada by age two.
"When his pediatrician said I think he might be autistic, I said don't even say those words. I knew where her train of thought was because every time I took him for his checkup, she would say, 'Mommy, how is Adian doing? How many words is Adian saying? Does Adian know his eyes?' Those were questions she kept asking. She said, 'Mommy I know it's frustrating for you. I understand it's hard for you to accept, but you need to understand that if that's the situation we need to deal with it.'" Sands recalled breaking down and crying. At 24, her child's pediatrician was intimating that her son had autism.
Autism is a common neuro-development disorder characterized by impaired communication, social interaction and restricted or repetitive behavior. It presents itself in children between the ages of 18 months and two years normally. Although it is a chronic disorder that has no cure, adequate intervention and therapy can assist children to develop into active adults and live close to typical lives.
The emotions
Sands was angry. But it was only the first of so many emotions - shame, denial, acceptance - she would feel to get to the point she's at today where she can actually speak about what she's been through without breaking down and crying.
"I was angry because we bought 'Baby Can Read' for him, because we were going to have this smart baby. Then it became the shame of it, because you think, what are people going to think? How do I explain this? Then the denial came when I started to think there's a possibility. It's like back in the day if you could pass for white, pass for white so you wouldn't have to be black. He could pass for a normal child, so he's a normal child. After the denial it was acceptance and what can I do for my child, because it's not me, but him I'm hurting."
Five years after his birth, Sands said she knows she had to go through each emotion because it's going through them that got her to where she is today, fighting for her son to find his voice as REACH celebrates Autism Awareness Month.
"One day I'm not going to be here, and what is my son going to do if I don't push ... fight now for him? Where is my son going to go? If I don't fight for him to get that voice in him, and that fight in him to say I have this, this [autism] doesn't define me, then I'm doing him a disservice," said the now 27-year-old mother.
She said going through the emotions helped. And that it has made her a stronger person.
"I was strong in character, but strong in fighting, that wasn't me, but now I have to fight. And the emotions light that fire. But in between lighting the fire and going through the storm, you have to look at your child and say I love you and when the doubt and sadness comes in I always say to [him] I love you, give mommy a hug and a kiss."
In January 2011, at the urging of her father-in-law, Sands said they got her son a screening. But he has not been officially diagnosed with autism.
"He has not been diagnosed, but if I have to check black or white, that's the box he fits in from the signs and information that I researched.
The signs
"When [he] started walking, he started tip-toeing and everyone found that fascinating. He will look at you, but not look at you. [He] could go to the VCR at [age] one and a half to two and turn it on. Press open, put [a tape] in, turn on the TV and watch it. And when he wants to stop it, he stops it. He saw me do it once. He can go on the laptop and once I show him the sites he can go on without me showing him. At one point I started taking out the television plug because I was like you need to go to sleep, and he would try to put it in."
Her son is now enrolled in the autism program at Garvin Tynes School and attends REACH meetings. In the seven months since he started, she said her son knows the days of the week by sight and can even unscramble them and put them in order. She's now teaching him his months and he knows his letters, but he still does not speak. Her goal is to do the best thing for her son to get him the help he needs.
"What experts knew about autism then to now has increased [in the five years of celebrating World Autism Day], but even so, the number of persons diagnosed with autism has also increased," said Kim Gibson, co-vice president of REACH. "In the past, statistics for autism showed that one in 100 children will be diagnosed with this disorder, but the most recent statistics released this year by the CDC (Center for Disease Control) now show that autism is increasing in the world and now one in every 88 children are diagnosed with it. And because it is more prevalent in males, one in 54 boys will be affected. Although we don't have any definite statistics locally, going by the numbers of children being diagnosed that we know of at REACH, the global statistics are likely to be relevant here as well."
The struggle
While Sands and her husband love their son, she said the road has not been smooth sailing and that dealing with a child with autism can be devastating on a marriage.
"It's hard for a woman to adjust first because they have to let go of their goals. And it's hard for a man because they're looking at their son and saying this is not the son I was looking forward to playing basketball with or football with, so you have to let go of those goals. I was listening to Rodney Peete talk about what his wife [Holly Robinson Peete] went through, and I was like this is me. Different people, different backgrounds, but the same story in a nutshell. You have to go through those things in your head. You have to go through those things as a couple. You have to let go as individuals, and then you have to come back together as a couple and say this is what we have to fight together."
And Sands said her husband is involved and that people are amazed watching the patience he has with their son because a lot of fathers aren't there.
"When you come to meetings, you see a lot more women fighting the cause because there's also a shame factor. [My son] doesn't have any external features, some do, but when his tantrums are bad, they're bad."
Now that she attends REACH meetings, Sands said it helped because she can look the next person in the eye and know where they're coming from.
"They understand how tremendous it is to achieve with your child. You can literally finish each other's sentences because you feel the same way ... you went through the same things. Especially as mothers, we're all broken down to build back up for our children, because of the weight of everything."
But one thing she's not ashamed of is her son.
And she encourages people to go through the emotions so that they can come out on the other side and do what's best for their child. But she also admits to feeling a tug at her heart when she sees other kids attaining certain milestones.
"Like any other parent, you prepare for so much. My godchild just took Kingsway's exam. My son was supposed to take Kingsway's exam, so when those milestones come up it tugs at me because that's where I was supposed to be and this is where I'm at."
But as people go about their life and see children acting out, she urges them not to automatically assume the child is rude, and to have compassion, because they may just have autism.
As April is observed as Autism Awareness Month, Gibson said there is a lot the public can do to help REACH shed more light on this challenging disorder. The organization urged corporations and homeowners to "light it up blue" by changing their light bulbs in their business places or homes to show support to Autism research.
During last year's "light it up blue" campaign, famous landmarks around the world like Niagara Falls, the Empire State Building, Rockefeller Center in New York, Cairo Tower in Egypt, Sydney Opera House in Australia, the Hungarian Parliament in Hungary and even Canton Tower in China participated.
By lighting it up blue, REACH and other autism organizations around the world hope to bring awareness and generate funds to benefit the cause.
People hoping to learn more about autism can attend a free autism seminar on Saturday, April 21 at Queen's College. On Saturday, April 28, REACH will end the month with a fun day at Camperdown Horse stables. For more information on REACH events and how you can contribute to helping children with autism, call 357-3900.
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