Single mom Rosanne Farley thought she was prepared for parenthood until her world was thrown into disarray when her daughter was diagnosed with mild to moderate autism. She wept and asked the why questions but soon realized that she had to buckle down and focus on the task of ensuring her child was given a fair opportunity.
That she did and coupled with her self-teaching and that which was taught to her, Farley has dedicated her time and energy to helping her daughter to adjust and while the rewards were limited at times, they have been progressive.
Today at nine years old, little Crystal Farley is in Grade Three at a private school and her academic performance has been excellent, but her days at home and school have seen many struggles even as her mother worked tirelessly to make them easier.
Since her daughter entered the primary level of the school Farley began visiting during the lunch hour. She would ensure that she eats before sending her back to class, because Crystal’s communication skills are still limited and her peers are not as understanding.
“I go almost every day at midday. Only last term I took a week off because I was just tired… I am right back at it,” Farley shared with the Sunday Stabroek recently.
She described her daughter as self-driven. When a subject area interests her, she does supplementary reading without prompting but if she does not like the subject it proves to be difficult to get her to focus.
As her mother spoke, Crystal sat at a nearby table reading aloud. She then suddenly spun around and asked “What is she typing on the computer for?” And seconds later, “You all talking about me?” When her mother answered in the affirmative she frowned and said, “But she should be asking me questions.”
Asked what she wanted to be when she grew up Crystal said, “I want to be everything… a doctor, a chef and so on.” Asked what she liked to do, she thought for a moment and responded, “I like dancing and DIY (Do It Yourself) projects.”
How would you describe yourself?
“A popular Guyanese citizen,” Crystal responded, to the obvious amazement of her mom and she later added “I hope everyone likes me.”
At that point Farley looked at her daughter sadly and she explained that Crystal loves attention and has meltdowns when she believes she is not liked and this another issue that she has to work on constantly.
Met all milestones
Farley recalled that as a baby Crystal met all the milestones set by the clinic and she even started walking at nine months.
But at some point things changed and she became distant.
“She kept to herself most of the time. She was not engaging any family member in conversation or play, she just kept to herself and she also had poor eye contact when communicating which she still has today,” the mother explained.
Some of the symptoms that she displayed were inappropriate playing with toys, difficulties when there were changes in routine such as not being given tea in a particular cup. She was also not responding to her name.
Worried, Farley took her daughter for medical attention and was referred to specialist Dr Vivian J Carlson who confirmed her suspicion. “I suspected that she was autistic based on my research because of the symptoms so I suspected,” Farley said.
“But when I got home I went into the room and I had a meltdown. I cried but I knew crying was not going to help and I had so much to do.”
In her report, Dr Carlson noted that Crystal had significant delays in all areas of development and had particular difficulties with social interactions, communication and play skills.
“She is sometimes aloof and persistent attempts are necessary to get her attention,” the doctor’s report said and added that the child’s communication was “moderately abnormal with only about four words.”
Crystal saw the doctor just months before her third birthday.
“Crystal’s development is consistent with mild to moderate autism,” the doctor concluded and suggested that she would benefit from a very structured environment which provides her with consistent interactions and a predictable daily schedule.
Farley attempted to provide Crystal with the environment suggested by the doctor but months later she started school and this proved to be a very difficult period. She recalled the teacher reporting that when things were not done in a particular way, she would have meltdowns and sometimes walk out of the class.
But Farley said most of Crystal’s teachers have been sympathetic to her condition and while there might have been difficult days there were also many good ones.
As her daughter grew she began noticing more and more changes. “She was overly sensitive to certain sounds, particularly some advertisements, she would scamper off because she could not stand whatever they triggered,” she explained.
It was even more difficult initially for the mother of one as there was no local place that offered assistance to children like Crystal. But eventually Step by Step Foundation came into existence and Crystal was part of the programme.
Reaching her
While many days were difficult Farley said she knew she was reaching her daughter on some level as while she had a few words based on her research she learnt that some children spoke no words.
“While she was in school when I got home from work I would work with her because I was trained by the Step by Step Foundation to use applied behavioural approach… of training children with autism,” Farley said.
Over the years, Farley said, some of the traits of autism have become almost non-existent but Crystal does have meltdowns from time to time when a routine is broken.
“She is doing very well when it comes to expressing herself and desires, though there are some setbacks with communication as she does not always understand some situations. She no longer has strange attachments to objects, she plays appropriately with her toys and she does try to engage her peers in conversation,” Farley said.
She disclosed that her daughter has difficulty looking at persons when she is speaking to them and this creates a problem especially when she is communicating with her peers.
For Farley some of the more difficult times have been attempting to communicate something to Crystal that is basic and other children would quickly pick up and “I can’t get a response or a look indicating that you are even being heard much less understood.
“There were days when I was teaching her how to say yes or no appropriately and it took so much from me and at the end of the day she still didn’t get it. I would go into my bedroom and cry and worry and wonder when it is going to happen, how and what more can I do.”
But then there were days when she would “actually get it and you realise that she understood the concept of yes and no. Days where I would get a report from the teacher that together they overcame a situation.”
She pointed out that because autism is a lifetime disorder challenges would always be there and the work continues.
Farley receives tremendous support from her parents.
“Initially I would rigidly work with her and then someone mentioned how important it was to put aside time for yourself and I realized I had not done that and I was becoming drained. I started to do that and now it is better,” she said.
Farley does not see herself having any more children, apart from being single her big concern is how “I could deal with Crystal and another child or if the other child also has the same condition.”
Eventually, she wants Crystal to be able to be functional in society and achieve success academically and career wise. “I want her to be accepted. I know that she is different but I would really like for there to be more acceptance. And I want her to be happy,” the mother said simply.
Helping others
And even though her days are not easy Farley now wants to assist parents with autistic children as she sees how hopeless many of them are since they feel that their children are doomed because of the condition.
“My concern is for parents who are in denial, and who feel there is nothing they can do. There is help available I am willing to work with parents and teachers to help children overcome,” Farley said.
Step by Step Foundation is a non-governmental organisation that caters to children diagnosed with Autism Spectrum Disorder (ASD). Farley’s daughter had attended sessions there, but she pointed out that there is a waiting list to get into the programme.
She also noted that there are children with mild autism in the regular school system and teachers are not trained to detect the symptoms or to help the child.
“The foundation deals with children who are moderate to severe and so there is a gap for those who are mild. It is important that they get early intervention because it would difficult to reach with them in later days,” she explained.
Farley said she has a “regular job” but she is focused on starting up a programme to provide training for teachers to detect and help children with mild to moderate autism. Farley has been trained to use the Applied Behavioural Approach (the gold standard method for treating children with autism). She is now working on getting into the school system to train teachers how to identify the symptoms of autism, how to apply intervention methods for the regular classroom setting, and to provide recommendations for evaluation and therapy.
Farley can be contacted on 622-4281.
