Being a mother is hard as it is, but being a mother of not only one but two autistic children, in the middle of a global pandemic and systemic lockdown, with your neighbour calling the cops on you every time your children run across your flat and cursing at them to die, is a plight that most of us probably wouldn't have to deal with. As a parent of autistic child, stress is not a stranger in Karen's life.
With two children under the age of 6, been diagnosed with autism, this mother of two has her hands full with full-time parenting, trying to toilet-train them and get her oldest child to try to eat by herself.
But with a neighbour in the midst of all this allegedly applying undue pressure on this small family, Karen is hoping to raise community awareness on empathy towards families with special needs children.
She speaks to theAsianparent to show parents in similar situations that they are not alone, and to educate the public on being a little more gentle and considerate towards families dealing with autism.
For a Parent of an Autistic Child, Stress is a Common Enemy
Family plagued with communication issues
Karen's oldest daughter, who will soon be six years old, had to undergo heart surgery to patch up holes in her heart when she was around 4 months old, stunting her physical movements and delaying milestones. She is diagnosed with autism, together with her brother who has also been diagnosed with developmental delay in addition to autism.
While being responsible for the care of two autistic children, Karen recognises that it is the limited methods of communicating with her children that affect herself and the small family the most.
"In the beginning, we could only communicate with them using Picture Exchange Communication System (PECS) and Communication board as we had to try to minimise the chances of them from getting frustrated which lead to meltdowns because they are not able to verbalize their thoughts, so communication was always a huge issue," she notes.
The PECS and Communication boards are both forms of alternative communication and visual representations of language, in which a child with little or no communication abilities is taught to interact with an adult by giving them a card with a picture on it, to relay a request.
PECS and Comm board that Karen uses to communicate with her children. | Image source: Karen/Supplied
Karen also notes that the children display "extreme behaviour via extreme tantrums" at random times, and the family must immediately observe what happened and determine what triggered them in order to resolve the issue. During times like these, any established links to communicate with the children break down completely and it is very challenging to understand what they are trying to convey.
"We struggle most at trying to prevent them from harming themselves or others during their meltdowns. My girl will hit her own head with her hand or bang her head on other items and sometimes may even grab other peoples’ hair tightly or hit their head during such outburst. My boy will pinch, scratch, beat or grab people tightly, oftentimes causing bruising on me and my husband," Karen says.
"It has been so challenging physically, mentally and emotionally having to handle all their behaviour and having to train them in their daily life routine. I am constantly facing lots of obstacles too because they are not able to tell me so I have to keep trying ways to understand their needs all the time. I am physically and mentally drained as I am alone at home with the children most of the day," she adds.
In the backdrop of these issues that are common with families dealing with autistic children, Karen has to also put up with a neighbour that calls the police on her and who also 'curses [her] children to death.'
"My direct neighbour downstairs has been constantly complaining about the noise from my children. She will always accuse them of jumping and stomping, even when they were not. But what was really hurtful were that a few times when we heard her scolding and yelling by her window, she would curse for my children to die. I mean, what human being would curse for someone else’s children to die? It was extremely hurtful and traumatizing," Karen says.
The problems with her neighbour started from the moment Karen's family moved into the house.
However, the complaints that started with the very first day of moving into the flat intensified as the years went on.
"After a while, the complaints got worse because she started calling the police, even grassroots leaders and they either kept coming, calling me or even sent letters and emails to me to ask me to control my children.
But how am I supposed to control my children when their tantrums are random and unpredictable?" Karen asks.
Despite there being other children in the neighbourhood who would play around in their areas, the neighbour's anger is directed only at her children, according to Karen.
"I really feel her anger at us is unjustified because even when my kids walk, I get complains from her, when they fall accidentally I will get complains or police will turn up at my unit. There were even times when the police came because she complained to the police about noise from our unit, but my kids were sleeping all that time," Karen says.
"I understand that my children can be heavy-footed and tend to fall easily. But she accuses us of making noise the whole day and every day. It's not always us, residents from around the block also sometimes make noise from various activities but the neighbour just targets us alone," she adds. "Sometimes the neighbour will start using an object to knock her ceiling and call the police because she complained we were noisy, but oftentimes we would not even be home. She would also use a bamboo pole to hit my kitchen window through her window downstairs when I am doing laundry while cursing for my children to die."
"It feels like discrimination just because I have 2 special kids, or maybe she hates children I don’t really know," Karen says.
Trying to resolve matters to no avail
The negative attention her family had been receiving prompted Karen to take matters into her own hand and try to sort out issues with her neighbour.
"We have met up for mediation with the Housing Development Board (HDB) officers, police officers and grassroots leaders at the residential centre across the road. And over the past few years, I’ve tried my very best to try and lessen the possibility of noise levels created by my children," she says.
Commenting on the DIY measures that she has taken to lessen the noise to not elicit complaints from her neighbour as she cannot afford professional soundproofing, Karen says:
- In the beginning, we used interlocking mats in a bid to DIY "sound-proof" our home, but when my kids started to take them out piece by piece to play and chew on them, we removed them
- We then changed to yoga mats, but after a while, the yoga mats gave way and became slippery. There were instances when my children slipped and fell, knocking their heads in the process, so we removed those as well.
- We then replaced the yoga mats with foldable mattresses with some small baby foil mat.
- We were still receiving complaints so I placed to a big rug on top of the foldable mattresses for more padding. It was still not good enough, and my daughter later developed an allergy to the rug so we had to remove it as well.
- We now currently place 2 big baby mats, a foldable mattress, a bean bag, line a small portion of the living room with foil mats, and place a small rug in my bedroom floor.
A picture of the DIY sound-proofing measures that have not proven successful. Photo: Karen
However, even with mediation and trying out options and laying out different kinds of mats, the issue with her neighbour is still not resolved.
"I wish that someone could really give me a solution to what I can do or any other ways I can soundproof my house because I have tried everything but it’s still never good enough for that neighbour because my other neighbours have been patient and understanding," Karen says.
"Even with a memo from the hospital doctor explaining why my children behaved the way the authorities do not seem to help in letting the respective agents understand the struggles I am facing," Karen says.
Karen said the harassment has greatly affected her mentally and physically. "I am under tremendous stress and to be honest." She added that there were times she wanted to give up when the authorities come knocking at her door.
The mum mentioned that there were instances wherein she would have very dark thoughts of wanting to end her and her children's suffering once and for all. Karen also said that has been diagnosed with Thyroid problems due to the amount of stress she is facing and was told that she would have to undergo surgery as the growth is increasing but will have to keep it for another time as her finances do not allow it.
Community support for families with autism
Karen feels that there is still a long way for the community to go with regard to Autism awareness and acceptance and that tolerance afforded to families who are already battling it out on all fronts in life is a gracious and necessary act of kindness that we must all exercise.
"I just feel that because my children have special needs, it is always assumed that we are in the wrong, we get discriminated and bullied always by the people who have zero empathy for us just because the children are different. There are all these talks about building a caring society but its always said by those who have not lived through what we did. I am harassed as a mum who is trying so hard with 2 innocent kids," she says.
Karen advises families in similar situations to seek help and not suffer in silence.
"Don’t suffer discrimination in silence. Find a family service centre, talk to your family or even your friends or special needs support group. Speak up and don’t suffer in silence. I am really lucky to have this chance to speak up one day or it will be too late soon. Let them understand that we are just trying to live our lives," she says.