Yesterday Monday the 24th October was a good day for me at the Center. The day had started with my taking Ziim to the the hospital for her appointment at the neuroclinic in the Lagos University Teaching Hospital (LUTH). That meant our leaving the house as early as 6.45am. At 7.15 we were there, trafick was light, good for a Monday morning. There were already a number of people waiting , the doors were yet to be opened, so I dropped our card and went back to the car to give Ziim her medication and breakfast.
The staff started arriving about 8.00a.m , I had hoped to be among the first five people, but it appears as if I did not even make the first ten. I sat down and silently prayed that the doctors come in early, I wanted to get back to the center on time to help in working with the children before lunch time. I weighed my child, (the scale stopped at 19.5kg!!!) paid for consultation and waited. Fortunately the doctors came in about 9.30a.m, good. I noted that the consultant did not come in so I silently prayed that my file gets assigned to a doctor that will show interest in us, usually I would have prayed that the consultant gets to pick our file but since he was not there, I had to pray for a doctor that will not look at my daughter just as a specimen h/she needs to go through h/her present posting. I already have my concerns written down albeit in my head and I plan to just “guide” the conversation towards that. 9.55am, I walked in to see the doctor, she flips through our file; How old is your child? She is five ..my eyes widening for I thought her age is in her file. Have you been giving her the anti seizure medication as to the new dose? Yes I have. The frequency of the seizures have reduced considerable. In fact we have not had any grand mal since the last visit (she did not ask but that should be the next question). I continued, but I am yet to give her the baclofane (did not want to wait to be asked, remember I want to direct this discussion). Oh why? For two reasons; I was asked to give her 2.5mg twice daily, but baclofane comes in 10 and 20mg and I’m afraid that if I break it I may not get the exact dose plus that it is coated. She either was not listening or she did not hear me properly for she just took a call from somebody, don’t want to say understand for she said; you can just just give her the tablet as a single dose instead of two dose. No, she is to take 5mg a day not 10mg. Ok let’s see if there syrup formulation. She consults her book, yes there is so let’s work out the amount you should give her, she works it out, 5mls I hope you find the syrup, try the big pharmacies. Good hm??. Now the second reason for not giving; I expressed my apprehension, my daughter is yet to have head control, does it not mean that the muscles needed to support the head is yet to have enough strength to do that? She says possibly. Then my concern is that since baclofane is a muscle relaxant, would it not further relax the already not strong muscles? She says no. She writes my prescription, gives me a three month appointment and 10.00am, I was out of the office, good.
I got to the Center at 10.45a.m to meet a lady waiting for me with her nine year old son. I was told they came in as soon as the center opened at 9.00am. her son has cerebral palsy (cp). I welcomed them apologized for my not being there when she came , but I needed to keep the doctor’s appointment.
She was told I work with children with cp and she has brought her son for her to see what I can do for him. I quickly explained to her that I am not a professional in any right, that I am only a mother in a struggle with cp to see how much of my child I can wrestle out of the monster, and that in the process, I discovered that the fight will be better fought if other parents join me. The greatest challenge faced by parents (mostly mothers) is what to do with their children with cp while they go to work or look for source of livelihood in a society that does not seem to be aware that such children exit out side the walls of the orphanages or institutions, thus silently encouraging mothers to abandon their children with disabilities. Regular day cares and nurseries do not accept them, so the children are left at home (for those who are not abandoned) while their “well” siblings go to day cares and nurseries. So what to do? If you cannot find what you want try and provide it. I closed down my fast food outfit and started this center so that parents (mothers) can leave their children with cp and go to work and be rest assured that they are well taken care of. I told her of therapies I have looked into apart from the regular physio and occupational therapies. There are a few “special schools” (like Modupe Cole) but they only take the children from age eight. I have asked the head teacher what will be happening to the children before they are eight, she did not have any answer I can put down, she is not government after all. Haa. she goes, madam that’s actually part of why I am here. I need my child to go to school. But he is wearing a school uniform, I said. Yes, he goes to a public school and they have told me that they can no longer cope with him because he does not walk yet and is slow academically. The lady sounds and appeared learned to me, so I ask why the boy is not in a private school. I know that most, if not all learned parents in Lagos would not want to see their children hundred meters radius near public schools. Haa madam, all his siblings go to private school, but the private schools were the first to reject the boy. Anyway, I told her that I think the public schools have gotten better with the present government, so it is okay. I turned to the young man, let’s see how slow he is. Hello, how are you? Fine he responded with a smile that could melt ice in winter. How old are you? Nine. What class are you in? Primary two. You like school? Yes ma. He has functional use of hands, toilet trained, talks, though not as fast as may be a parrot, but sure talks and can express his feelings. So madam what’s the issue. Well they said he does not do well in exams. Sure that is possible, but not for lack of knowledge, but he is slow in writing and nobody takes that into consideration??? Oh yes, but how did you know? Even a blind man can see that I retorted. She wanted to see if the child can be coming to the center, she has been to a developmental center, they agreed to take the child but the fees are so high. This child does not belong to any center, he needs to be in school daily and can access therapies to help him further improve on his skills. With the assistance of a physio we can attempt to help him walk but he does not need to walk to be in school now, walking is something he can be working on while he attends school. But meanwhile we need to sort out the school issue. She has been to the school board and she has a letter that says the child should be in school. But the head of the school says the class rooms are not suitable for the child. We can do some little adjustments both in the classroom and may be the toilet area since one of the complains is that someone always has to carry the child to the rest room?? But first the child needs a wheel a chair/ a proper seat in the classroom, we can arrange that cann’t we?? The world disability day is around the corner, would you want me to visit your son’s school and have a talk on disability with the staff and children in the school? Oh yes madam that will be wonderful.
Then I told her about Conductive Education, that the Center is considering introducing that as their way to go. Though it is neither a therapy nor a miracle cure in the sense of the word, but it has been known to sort of liberate children and even adults with motor disorders like stroke from the clutches of immobility that such disorders have sentenced them to. It teaches them how to be comfortable in their skin if I could use that cliche’. The center is employing interested parents to be part of the drive to make it happen as soon as possible; there are 6 parents already, I gave her links to go read and she says; can I be part of it? Sure. She took some of the center brochures and left, we’ll meet next week for me to visit the child’s school in Ketu, a surbub of Lagos and see how we all can further help the young man and also attempt to see how the teachers can be more understanding towards the young man and people like him. Like, is it possible to give him some extra time to write his tests beyond the set time? is it possible for him to go with a shadow to school? Who pays for that? Well, the parents can, after all, were he to be “normal” in the sense the public sees him, he’ld be in private school so can that “his” money be used to pay for a shadow for him?. Can we get him extra after school assistance to go through his school work?
Before they left, we did a bit of what may be considered to help the young man and his family live “constructively”. Since the young man can use his hands, why not let him dress himself ( they do that for him!!!!!), we can get him leg braces so he can attempt to stand holding onto things.
We were both happy. Happiness comes by making other people happy!! A good Monday wouldn’t you say? How was yours?