There is a question that I ask myself on this journey of caring for a special needs child, whose journey is it, the child or the caregiver? Where do you start explaining a journey that is not your own? Most times, I feel we guardians (caretakers) of special needs children become their journey or victims of their journey. I agree that this journey is different, long, and nuanced, but I try to remind myself that my child is going through the challenge, not me. No matter how terrible some of the challenges I encounter, I can never fully understand what he is going through.
Having a special needs child is challenging but having a special needs child in Nigeria is doubly terrible; people show no mercy in their words, glances, outbursts, and more. Sometimes, I am left managing grown adults who cannot be kind to a child. I hear people say, well, I did not know he is challenged (most times, they say retarded, I have to breathe and calm myself so I do not lash out). Gosh, the words I have heard, the experiences I have had, let me share a few.
Nigeria! Someone came to make my daughter’s hair and, finding out my son was non-verbal, asked me to buy a new bell (yes o, bell) while she would help me fetch water from a well. Then said, I should pour the well water into the bell and make him drink it first thing in the morning, then ring the bell in his ears. This self-prescribed medical intervention should be done for 7 days. Where do you begin to educate such ignorance mixed up in religion and diluted in care? I just told her thank you and passed the attachment (hair extension) so she could face her work.
Or is it when I have to cut my son’s hair? Cutting a child’s hair on the spectrum can be so horrible because they hate noise, so haircuts are always a challenge. I remember taking my son to a barbing saloon. After the first zap of the clipper, the barber then said he was not doing it again because he does not cut the hair of children that do not stay still. I told my younger sister about this, and she decided she would take him for his haircuts. After a few challenging visits, she noticed that when she was in the queue with him, the barbers would go outside and act like they were doing something when a chair frees up, and he is next. All this to avoid cutting the hair of the “weird child.” My son is not aggressive; he would just flinch and be uncomfortable, so you need to manage him. When a barber finally agreed to cut his hair, he started by advising her to train her child properly, that he is too big to not stay still for the haircut – “train up a child in the way he should go” and all of that. She finally had enough, after shouting and shutting him up, she decided to educate the barber and the rest of the salon on autism.
I get the ignorance on autism, what I do not get is the bad behaviour by adults. So many times, the needless advice is laced in condescension. The child can hear, see and feel you, be kind! It’s not too much to ask for. I love my special needs son, and I am proud of him and will not hide him at home because you are uncomfortable!
My son is diagnosed with autism, ADHD, and sensory processing disorder. It is his journey, but it also is mine. I know the pain he goes through because it mirrors the pain I feel in my heart when he is trying to express himself about something he needs and cries for hours in frustration. I am the one running around and showing him different things, trying to figure out what he needs.
Or should I speak about how he regressed terribly during the COVID-19 lockdown, stopped wearing clothes, and would not sleep except he is medicated? Do you know the pain in your heart deciding that your son at 5 years needs sleeping medication to go to bed? Or that his favourite aunty (who takes him for all his haircuts, spoils him silly, and has been an anchor) is getting married, and he has to stay at the car all through because he would not wear clothes. Or the frustration at the exorbitant rates we pay to get him care.
Truthfully, all these things I have highlighted hurt badly, but I am a tough mama, and I can take it. Do you want to know what breaks me down anytime I think about my son? His future in Nigeria. The future seems so bleak. What if he cannot cope with education and it is no longer an option, as it is for many children on the spectrum. What kind of future does this hold for him? What happens to him if he cannot speak as clearly as other children his age? Would he always be looked down on by other kids? If he struggles in his day-to-day life, especially self-care, does that mean that I would never be able to leave him on his own?
All these are peculiar in Nigeria, mainly because there is no government intervention (truthfully, there is none). We have the policy, we are supposed to have special needs centres, but the centres are better suited for physical disabilities (they are so terribly run, but that is a story for another day). What happens to children with developmental disabilities. In what kind of future would my son be integrated into this society?
My people, this is the reason I cannot sleep at night. After all the effort spent, if he is still regarded as a weirdo, wetin I don gain?