It’s World Autism Day today and Mrs Dooshima Okonkwo shares with The Interview the trials and triumphs of raising her eight-year-old, son, Terna Chukwunemerm Okonkwo, who was diagnosed with autism six years ago:
How was your child diagnosed and at what age?
My son was diagnosed when he was two years old. Unfortunately the diagnosis journey began here in Nigeria with mixed reports from different medical facilities and we had to end up in a children’s hospital in the UK, where finally we were able to get a comprehensive report on the condition and an intervention plan was provided.
How has having an autistic child changed your life?
Yes, it has in many different ways. It has brought out of me as a parent, our marriage and for our family aspects of ourselves we never even knew existed.
The diagnosis has brought out of us our strengths and weaknesses; it has given us courage to love unconditionally, resilience in the face of so many unanswered questions and uncertainty, grace to better appreciate the supernatural and Almighty GOD.
Notwithstanding, if I were to sum this change and effect on us in one phrase, I would say, “It is an amazing adventure.”
What about your other children; in what ways has it also affected their lives?
I have two children and my older son is the one diagnosed with Autism, ADHD and Sensory Integration Disorder. The younger one is a typical six-year-old.
He used to ask us a lot of questions: “Why his brother behaves in a certain way sometimes” or “Why he did not want to do certain things” and so on.
Even though he does not understand his brother’s behaviour often, it has not affected the love and bond between them as siblings; that bond is very strong and sometimes so very touching to see.
He is extremely protective of his older brother, proudly explaining to his classmates in school about the condition and helping his brother out if required especially, with learning and other daily living activities.
I think it has made my younger son more sensitive, kinder, and in many ways, more than the everyday typical six-year-old.
There is the need for laws to support some level or standard of services. There was an attempt last year on a bill establishing a Special Needs Commission, but where that is right now, who knows?
What kind of financial implication does this have for you and your family?
Despite having been blessed with good incomes, the financial cost is simply crazy and sometimes overwhelming because every aspect of therapy associated with your child comes out of pocket expenses.
This begins from the medical to psycho-educational assessment (which gauges how ADHD and learning disabilities affect the individual child’s learning, and outlines a customised plan for intervention and support with the child’s school) to speech, occupational therapies to the biomedical supplements and specialized dietary interventions plans.
All these intensive therapies are not covered by any type of local health insurance package at all or subsidised in any way.
This is minus the educational learning costs of inclusive learning, where and if it is available mostly in private educational spaces and costs range from N500,000 – N600,000 per term.
All these for just one child. The financial costs of raising a child living with special needs can deplete your resources even with your best financial planning strategy in place, especially in a country that has inadequate multidisciplinary structures and social support systems to assist caregivers in anyway.
What are the lessons you have learnt raising your autistic child?
“You are much stronger than you think!” Also, there is a supernatural God looking out for us and our needs in ways we could never have imagined; for anyone to really fully appreciate what love means, you have to experience it unconditionally.
What’s that question you wish people would stop asking you concerning your autistic child?
Why do you think you have this type of child!
What has been your greatest source of strength and support through it all and how?
God, husband, parents, and a handful of wonderful friends and helpers. I also have an amazing strong local support group and network of parents encouraging one another, despite their own unique situations of raising their own children living with special needs.
Do you think the government has been supportive and in what ways can it do more?
Personally, government has not helped as it should. We lack hospitals which have the capacity ranging from lack of multidisciplinary manpower to specialised equipment that can support parents with a comprehensive diagnosis.
There is the need for laws to support some level or standard of services. There was an attempt last year on a bill establishing a Special Needs Commission, but where that is right now, who knows?
I think simple interventions within hospital settings, legislature and some form of subsidies or “breaks” to help parents cope with the huge out of pocket costs for raising persons living with special needs will greatly help many families and homes.
The financial costs of raising a child living with special needs can deplete your resources even with your best financial planning strategy in place, especially in a country that has inadequate multidisciplinary structures and social support systems to assist caregivers in anyway
What advice would you give other families raising an autistic child?
Many times as we travel through this adventure of raising our differently enabled children, we will experience disappointments, pain, betrayals, fears and confusion, but we cannot afford to ever give up on ourselves and our children!
Because from these challenges can rise deep love, strength, grace, courage, resilience. It forges amazing bonds and beautiful relationships, which make a positive difference in so many lives beginning with ourselves.
The lives of our loved ones who are simply different but not less in any way and the larger communities we all live in.
As the world celebrates World Autism Awareness Day today with the theme “Assistive Technologies, Active Participation”, in what ways has technology helped you with your child?
It has greatly helped him better communicate, learn and have fun.
How are you celebrating today?
Just being grateful for my family, all we have been through yet standing strong together. Celebrating all the miracles and milestones our son has achieved over the years… which at some point we doubted he would be able to do.
