Special Needs Parenting (A Personal Story 3)

Jennifer Mbogo is the lovely mother to an energetic and full of life 10 year old boy on the autism spectrum. She initially suspected that something was off when her son began to walk and would walk with his toes curled inwards, however she brushed this off as him just being goofy. At 2 years old her concern grew when he suddenly stopped talking despite him saying one or two words prior. The doctors initially informed her that this would pass but still at 3 years old he did not talk and she decided to consult another doctor whose feedback was as blunt as it was crude: “This is what autism is and your son will never be able to do anything and will always be dependent on you, he will never learn to talk, to write…” These words hit Jennifer hard “at that point I just wanted to die. I wanted to kill myself and take my son with me” she recollects.

Managing to muster some strength, she went online to find out more information about autism and stumbled across Autism Awareness Kenya who hold monthly meetings where they bring in specialists. “There, I was connected with other parents and professionals, and very quickly I was able to get the ball rolling and get to know about special education professionals…and that really helped a lot, that really gave me hope as I got the tools needed to help me cope and to help my son,” she says adding that most of her relatives were not supportive as some related the condition to witchcraft and stopped inviting her and her son to family events “the kids didn’t want to play with him and the adults didn’t want to deal with him,” she explains.

Despite being more informed, Jennifer slowly began to isolate herself and would have bouts of depression which made it difficult for her to keep a job. Eventually necessitating her to go into business opening up an insurance agency of her own allowing her the flexibility to take some time off when needed. “It was tough but it was by God’s grace… the landlord was very understanding and even the ‘mama mboga’ would give me groceries on credit for about 3 months.” She currently relies on a handful of cousins who are the only ones who understand what she is going through, and are even willing to have her son stay with them for a while, giving her sometime to herself.

As if this was not enough, finding a suitable nanny also proved to be a challenge. She would take the time to train them on how to take care of an autistic child from managing his schedule to his strict diet which was new to them. However, most of the ladies would still leave after a month some being truthful and saying they won’t be able to manage while others would make up excuses to leave and not return due to fear that her son might be cursed. Upon most of their departure is when she also discovered a heart breaking truth that some of the ladies would beat her son which was the reason why he would always cry when she left and even began to wet the bed. Warning signs which Jennifer had earlier assumed was just separation anxiety.

Things did not get any easier when her son joined school as despite teachers knowing his condition they really did not understand it. At the end of his school year, she noticed her son hadn’t written anything in his books from May. When she asked the teacher, she was informed that her son was too hyper and hence they would just let him run around in the field despite her having paid school fees “and when I asked them how he was going to go into Pre-unit having not learnt anything the principal responded ‘who told you he is going to pre-unit?’ and just like that my son was expelled.” She eventually found a good integrated school which worked perfectly for her son and has teachers trained on taking care of special needs children. “The government needs to enforce the laws of children having a right to education… some public schools do not admit our kids (special needs kids) as they are not equipped… If you insist they will admit them, but you will find that your child is either left to run around in the field all day, or will be asleep in class or beaten every day… they will not learn! This might mainly be due to the large teacher-student ratio which doesn’t give them the bandwidth to pay special attention to one child in a class of 40+ student….and since you cannot keep this child at home as you will then be the one breaking the law, what do you do? I cannot afford to take my child to private school, I cannot afford to take my child to public school and hire a shadow teacher…what does somebody who doesn’t have the means to do that, do? This is why sometimes you will find some kids locked in the house alone…you can’t find a nanny and day cares and schools are out of reach or unwilling and yet you still need to work to support the family.”

Despite all the challenges Jennifer and her son have gone through, she still stands stronger having learnt how to take care of her son and having also identified a suitable nanny and school and has some great ideas and advice for all of us “to the private sector I would urge them to take the time to see the ability people with autism have. These kids are very talented and there should be more effective programs being run that teach them ‘soft skills’, vocational skills and how to use technology. If companies could be more accommodating, for example letting them work from home or even giving them a quiet office, given their laser focus and attention to detail they can be really good employees. Autistic individuals can make huge contributions to society.

My request to medics would be to be a bit more attentive, and help parents identify delayed milestones which could be early signs of a condition. They should also know how to counsel when giving a suspected diagnosis and at least have a referral list where a parent can get a confirmed diagnosis and additional information on how to deal with the condition… They should also be much more compassionate and not be harsh to children with special needs. This might relate to training on identification and sensitivity to children with special needs especially the “invisible” conditions such as autism.

With the rise in awareness I am glad my son’s generation will not have to deal with a lot of stigma and the struggle of not being able to support themselves.”

We ended our invaluable time with Jennifer as she added how great it would be if the government offered assisted living to individuals with mental health conditions given that at the moment most of them are taken to Mathare Hospital. “People with autism tend to wander off and can easily get lost… they could be given a home-like environment, instead of a mental hospital, but a place where people with different life skills are supervised and assisted where possible as a first placement option. Second could be a place where those who cannot take care of themselves have a state funded caregiver who can look after them in, for example a group home where their skills could even be identified and harnessed.

As a society we can and should all play a part in raising awareness on special needs as well as offer our support, even if it means something as simple as giving them your seat in the ‘matatu’. Let’s all strive to make a difference.

NOTE TO OUR READERS:

Did you know that the government offers financial education assistance for persons living with disability even up to a higher diploma? All you need to do is contact the National Council for Persons with Disabilities and you will be required to get an assessment done in one of the government hospitals. After which this report will be sent to NCPD where you will get a card you can use to apply for funding. If approved (as payment is not guaranteed) they will pay the funds directly to the school/institution and also offer other physical aid equipment if needed. You can contact them on 0800 724333 (toll free); 0709107000; info@ncpwd.go.ke or www.ncpwd.go.k for more information.