Autism & Relationships

Written by Cabral Opiyo

Having a child on the spectrum can be a daunting feeling for any parent and having to be okay with it and not pass that anxiety to your child probably tops the list of your priorities. The world is always judging and misunderstanding you and your child, you do everything you can to shield your child from the gaze of the world, but what happens when that misunderstood scrutiny is much closer home? What do you do when it’s your siblings who judge and keep your child at a distance due to her condition? In the second installment of this series, Kate tells of her sixteen-year journey of dealing with skepticism and unkind interactions with her siblings due to her child being autistic.

Kids are a lot of work and every parent requires help from time to time to unwind and live their lives a bit, a parent with an autistic parent requires even more support than usual because one has to always be on toes when around children with autism to keep them safe. So when Kate had her child and the child was ill for months, after months of testing she was diagnosed with autism she was scared but she soldiered on for her child. The frustrations from the crippling medical tests and medicines were multiplied when Kate had to stop going to work because she just couldn’t do both and she chose her child. If she thought she would get unconditional support from her family to help her raise and take care of Halima she was wrong, her family was alone on this arduous journey.

Understanding Halima took a lot of research and practical experience for Kate and her husband because there is no sure way of predicting the trajectory of a kid on the spectrum. There were a lot of accidents in the early years where Halima would bang her head on the walls, bite herself till she drew blood and hit windows with her hands causing cuts. They visited the hospital a lot until they understood what caused the physical incidences, Halima acted out when she was frustrated and went as far as breaking things, tearing up pillows and other household items. Of course Kate tried her best to explain to her family why Halima behaved the way that she did and it took her a while to understand that some of her siblings were keeping her at arms-length.

Kate’s sisters were afraid that Halima would destroy their leather seats and delicate household items and as such she wasn’t invited to their houses. Kate could not abide this attitude and of course she sided with her daughter and stayed away from them as well, a rift that has only widened as the years have rolled by. The people she was supposed to be counting on to help her bear her burden and encourage her even in the face of a judgmental society were the ones shunning her, in effect she was alone. This dismissive attitude has filtered down to Kate’s nieces and nephews who do not have much regard for Halima and do not like being left alone with her because they don’t want to tend to her needs.

Kate’s parents were initially very receptive to having Halima around and even consented to being left alone with her as Kate tried to earn a living. In fact, Halima absolutely adores them for this very reason, they were there in the early stages and she learned to trust that they would take good care of her. But as she has slowly grown into early womanhood, even her loving grandparents have become a bit apprehensive when it comes to taking care of her. See, Halima occasionally has seizures which are easily managed at home with the right handling but her grandparents get deathly scared when she gets them and they won’t touch her with a ten foot pole. People are scared that something bad might happen when Halima is in their care and so they try to avoid being around her as much as possible.

House helps have come and gone by the droves and still, Kate has not found one soul that can take care of her precious baby to a degree that satisfies her. She has personal day to day needs that need real-time assistance including; help showering, brushing her teeth, dressing and occasionally eating. As time has gone by, fewer house helps have been inclined to help her in these activities which lead to her being neglected whenever her mother is not around, leading to frustration and self-harm creating a vicious cycle.

This state of affairs has severely limited the latitude Kate gets to do her personal errands, she almost always has to be around to take care of Halima because no one else will. The one person who has filled in admirably in the role of secondary caregiver is Kate’s youngest child, her ten year old son who has had to grow up very fast due to his sister’s condition. He basically never went through the phase of being the ‘baby of the house’, he went straight into protector mode and is his sister’s number one friend. He has learned how to do first aid and assist his sister whenever she gets a seizure from the infrequent epileptic attacks she gets.

Where adults run away whenever Halima is throwing a tantrum or hurts herself, he steps in and calms her down while administering first aid. Circumstances have forced a ten year old to be one of Kate’s strongest support systems and he has never disappointed. When Kate needs to go out urgently in case of a job or errand, she leaves the siblings together and younger brother takes care of elder sister admirably.

One of the best things that has ever happened to Kate is her starting a support group for parents with kids with special needs. It has turned out to be the non-judgmental community that they all needed and they have swapped stories, found sympathy, shared productive ideas and offered a shoulder to lean on during tough times. This tight-knit community usually meets with their kids where the camaraderie has been evident and even when one of them needs to go out and they don’t have a helper to leave their kids with, they call each other and help each other out. The group has been a life-saver in knitting close relationships and real life sharing of resources.

The Covid-19 pandemic has been tough on Kate; fewer people are willing to help her look after Halima due to the contagious nature of the disease and finding work has been even harder due to the lock-downs imposed by the government. The therapy clinic the kids used to visit has been converted into a covid-19 centre and no other area hospitals offer the same services creating a huge problem for parents like Kate. As such, Kate has been forced to prioritize getting money for medicine rather than household items. This has forced her to appeal to the area MCA, chief and well-wishers to help with food and household items to sustain the children with special needs, a campaign that has succeeded in the short term.

It hasn’t been all doom and gloom though; Kate states that the pandemic has helped her learn her daughter’s strengths and weaknesses even more as they’ve spent even more time together. Her son loves to draw and he has been teaching his sister how to do it and supervises her as she attempts to sweep and wash dishes, activities that were beyond her a few short months ago. The more Halima has heard family members call each other’s names, she has learned how to say and pronounce them even better.  Best of all, Halima is growing up and learning how to do things for herself including; showering, brushing her teeth, dressing herself and grooming herself.

It hasn’t always been easy but Kate has soldiered on, breaking old, destructive and judgmental relationships and building new, constructive and loving relationships that give her better hope for the future even when things seem bleak. It has been sixteen years and Halima’s is the purest relationship Kate has come across and in the grand scheme of things, that’s all that matters.

Leave a Reply

Your email address will not be published. Required fields are marked *