It goes without saying that having a child diagnosed with a disability inadvertently places a huge strain on a family’s finances especially as in most cases you find that the mothers make the decision to resign from their jobs to assume primary care of the child thereby reducing the family’s earning power. In Nigeria it’s not any different but the situation is greatly exacerbated because we do not have access to any federally funded programs for kids with disabilities as obtains in most Western nations. For even the wealthiest among us, a diagnosis of any disability presents a huge challenge because the cost of care is understandably very high. Most average families struggle to or are honestly unable to meet up with the financial demands worse still the fate of children with disabilities born into low income or no income families is quite pathetic and downright wrong. With no support from government, there are very few individuals, organizations, foundations or charities that are currently focusing on providing care (free and in different forms) to low income families with children with disabilities. I have personally been contacted by families that do not even have the resources to finance an assessment much less have the child properly catered for in a private establishment and this presents me with some challenges. Ideally and in many countries in the West, a multi-disciplinary team specialized in the assessment and diagnoses of Autism Spectrum Disorders are consulted before a diagnosis is given and treatment commenced. The team is generally made up of a Family Program Co-coordinator; Clinical Psychologist; Speech & Communication Specialist; Occupational Therapist; Pediatrician; Behavior Modification Therapist; Child Psychiatrist and a Neurologist.
To my knowledge (and I stand to be corrected) we currently have no centers in Nigeria where we can have access to a such a multi- disciplinary team, previously most parents that could afford to, have had to go to the US, UK or South Africa for comprehensive diagnosis (most still do) and the rest just couldn’t do much and were lucky if they were able to run into any of the very few pediatricians that knew enough to give them an accurate diagnosis. Currently, there are a handful of Autism Organizations that parents can go to for assessment but I don’t know of any that has the full range of specialists nor can a majority of the people affected really afford the cost of an assessment. I have learnt that the average age of diagnosis for those that can afford it in Nigeria is about 7/8yrs which already foils the entire practice of early intervention. For the less privileged there is no diagnosing and no commencement of treatment; in addition, a persisting culture of shame, stigmatization, ignorance, and denial surrounding having and caring for children with developmental disorders ensures that most parents spend time attempting to conceal their children than getting them the desired help. Unfortunately, even if they wish to, as previously stated there are currently no federally funded programs that they can access. Lagos States is currently the only State in the Country that has inclusive units in the public school system that is free to all parents but the schools are honestly not functioning properly, they are understaffed, over populated and not properly organized nor the children properly categorized by disorders. An Idea – We can come together as parents to adopt these units and begin to effect some change in the children’s lives
Our needs are too numerous to mention but we need amongst other things a Nigeria Autism Center that can provide specialist services with ‘branches’ in all states in the federation (ideally one in every ward) that every family rich or not-so-rich can have access to. We need multiple inclusive schools in all states of the federation that will provide free, tailored-education and related services for all children with developmental and learning disabilities within the public school system; we need early intervention centers for infants and toddlers with the disorders and we also need vocational/special skills acquisition centers for young adults living with these disorders and we do not have to wait for government before we can start to doing something about it because the entire society will bear the cost eventually if we do not do something and quickly. I know it is difficult for us to look beyond our own individual challenges but I believe that there is always a God directed purpose behind every challenge and the few of us that have the means ( even if we struggle) to get our children started on the journey to recovery must help others share that hope too. We all know that these are individuals with unique abilities and gifts that if harnessed properly can contribute to furthering the lot of mankind. I am daily inspired by my son’s progress and potential, two and a half years after his initial diagnosis Bubu is doing exceptionally well, he has gotten speech back and is well on his way to complete recovery I sincerely believe that he is the hardest working 4year old I know and he does it all with a smile on his face and a spring to his steps even on the bad days. He is exceptionally gifted and continues to amaze us each day, I know we still have a little way to go but we are sprinting to that finish line with joy in our hearts and gratitude to God for His Grace which sees us through each day. This is in sharp contrast to a mother I have met, a petty tomatoes’ seller with no means who prays that God will call her daughter back so the girl can be free of her challenges and have some peace at last. Or the mother that locks up the son in a homemade cage with food before leaving for work every morning because she has no other solutions. We all must ensure we do something to bridge the gap between these two worlds to help replace frustration and despair with hope, to help change a life and hopefully help children fulfill their destinies. Our demands are many, noble and ambitious but very achievable if we all put our minds and backs to it. Our goal remains’ raising healthy children that will live meaningful, independent, productive and successful lives. While we eagerly await the outcome of our various national campaigns I think it is only right that we, parents of children with ASD in recovery start to effect some change in the lives of others, no effort is too little. I equally seize the opportunity to call on individuals, groups, philanthropists, foundations and corporations to put their hands on the plough. It is my sincerest wish that we would all be enabled to show some love to the less privileged with similar challenges and show our government how it is done. The good Book tells me that with God nothing is impossible, let us all do our part and leave the rest to God, as we do that I know that God will continue to strengthen and harden us to difficulties, yes He will continue to help us; to hold us up and to retain us with His victorious right hand of rightness, justice and healing. I leave you with these final words “Seeds produce after their own kind so sow a seed in someone else’s life today and watch it come back to you in greater measure”. The devotional reading from the UCB Word for Today for May 16, 2011 captures it perfectly it says
“…There is a cloud, as small as a man’s hand, rising…” 1 Kings 18:44
Every success story begins with somebody taking a small step or sowing a small seed, which usually represents all they have at that moment. Simply stated: everything big starts with something small. If you’re not willing to start small, you can’t start at all! The servant who kept telling Elijah nothing was happening, finally saw something. It was just a tiny cloud, but it had great potential. God loves to use things we think are insignificant. He used a boy’s lunch to feed a multitude, a slingshot to bring down a giant, and a handful of clay to restore a blind man’s eyesight. He can use a little job, a little money, or a little idea to bless you. Little clouds are indicators of what’s coming; they’re conduits God has chosen to use. When God promises you something, He doesn’t need anything big to make it happen. Often the change that impacts many starts with one individual. Whether it’s an Esther or a Paul or a Mother Teresa or a Billy Graham, God only needs one person who believes Him and dares to step out on His Word. When God pours out His blessing upon you, you’ll begin to see three things. First, that your problems are just an opportunity for Him to ‘…show Himself strong on [your] behalf…’ (2 Chronicles 16:9 NKJV). Second, that His ‘”…strength is made perfect in [your] weakness”…’ (2 Corinthians 12:9 NKJV). Third, that you can reach a place where you actually begin to thank God for your enemies, because God ‘prepares a table’, and vindicates you right there in front of them (Psalm 23:5 NKJV).
Culled from www.ucb.co.uk