April was adapted by the United Nations as Autism Awareness Month and this week I have two posts from two mothers who have a child with autism.
Today’s coffee chat is with one of these ‘warrior’ moms and I find it a huge honour and inspiration that she has shared her story and journey here on the blog today.
DO YOU KNOW WHAT AUTISM IS?
Well, first an foremost, autism is NOT a disease and is not contagious!! It is a complex condition that affects a person’s ability to communicate and interact with others, with a wide range of behavioural, social and language challenges. Autism is called a “spectrum disorder” because it affects each individual differently and to varying degrees.
Currently there is no cure for autism, though with early intervention and treatment, the diverse challenges related to autism can be greatly improved and in some cases completely overcome. Because each child or adult with autism is unique with symptoms and behaviors combining in many ways and varying in severity; every autism intervention plan must be tailored to address specific needs.
It is estimated that 70 million people worldwide have an autism spectrum disorder.
In recognition of the growing and unchecked prevalence of autism as a global health crisis, the United Nations General Assembly on December 18, 2007 adapted resolution 62/139 declaring April 2nd World Autism Awareness. The whole month of April has subsequently been adapted as Autism Awareness Month.
(Sources: www.tcri-ng.org, www.autismspeaks.org, www.autism.com, www.natioionalautismassociation.org)
TODAY’S COFFEE CHAT
[Psst, you better grab a cuppa & get comfortable before you join us for this chat]
WHO: Nneka Obiagwu
LOCATION: Lagos, Nigeria
OCCUPATION: Non-Profit Executive & Founder Child Restorative Initative
A BIT MORE ABOUT ME – I’m a wife and mum of 2 exceptional young boys, born and bred in Eastern Nigeria, I grew up in the campus community of the University of Nigeria, Nsukka from where I earned my Bachelor’s degree in Political Science. I also have a Master’s degree in International Conflict Analysis from the University of Kent, Brussels (AKA Brussels School of International Studies).
How did you find out that your child had autism and how did you deal with the news? Also, what would be your advice to other parents facing an autism diagnosis?
There is just no easy way to answer this question as the answer can fill a book, a really abridged version is that there were a complex series of medical events that subsequently led to his diagnosis. We had been treating my typically developing son for chronic constipation and some related GI issues with a persisting upper respiratory tract infections to no end when he quite suddenly and very dramatically fell ill following a typical well visit at 15 months. He got admitted in the hospital and upon his recovery and discharge, we noticed he had started struggling with his speech, which was very unusual and he appeared a bit socially withdrawn. The sudden speech difficulties progressed to a very noticeable stutter that worried us enough to book an appointment with his paediatrician. The doctor initially advised us not to worry as some male kids go through this ‘phase’ however, he too got concerned when months later my son had ceased to talk all together. Consequently, he called for a detailed examination by various specialists after which he was diagnosed with Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) – a form of regressive autism that occurs in otherwise typically developing children. A more detailed account of the entire story can be found on our website.
Dealing with the news:
To say that I was confused and afraid for what the diagnosis could mean for my son would be an understatement. However, I was determined not to give any more power to the situation than it had already taken without our permission so I found the will and determination within my faith to fight for my son rather than to be overcome by the gloomy prognosis the doctors where proffering. I prayed for clear guidance on the next steps to take; I read up everything I could; went for all the trainings I could physically attend including virtual ones via webinars to help me better understand EVERYTHING about my son’s autism. I found out that there are different types of autisms and different pathways for each type, therefore no two children with autism are the same even if they have similar symptoms. But most importantly, I was and I am still relentless with my prayers to God for continued guidance and restoration for my son. Surrounding myself with a support group of like-minded moms, who had been through the fight and whose children were already recovered and thriving in Nigeria has been an immense help.
My advice to parents facing an Autism diagnosis:
EARLY INTERVENTION IS KEY. We really need to hear this over here in Nigeria because of our cultural suspicions and ingrained discriminatory and stigmatizing attitudes towards individuals with special needs. In response to these attitudes, most Nigerian parents are so afraid and remain in denial of what is staring them in the face. People are very ignorant about autism and as a result many take no appropriate action while precious time ticks by.
With autism as with most complex medical conditions, there are no guarantees but autism treatment has come a long way since the days of old when institutionalization appeared to be the only solution. While there still is no cure or even an understanding of the complex conditions that can lead to the different forms of autism, what is agreed on is that with early intervention, most kids are able to learn to function in spite of the autism while some other kids ‘lose their diagnosis’ entirely (this is not in any way universal, as there are still individuals with severe autism and other co-occurring medical conditions that require lifelong care). I’ll also say become an expert in your child’s autism, stay up to date an all autism treatment options as there are new ones every other day. Finally, I will also say NEVER GIVE UP HOPE. I believe in God and my faith is that He is not bound by restrictions or limitations and that all things are possible with him. So I draw on my faith and consciously maintain a positive attitude focusing on his strengths and on doing the very best I can to ensure both my sons reach their full potential and fulfil their destiny.
How do you run a household with an autistic child?
Firstly, we always say ‘child with autism’ because we recognize them as persons and individuals first before their diagnosis. So running a household with a child with autism is similar to any other household , only it is twice as hard because of the added strain of the child’s special needs. For all involved, it is a skilled balancing act of everybody’s needs to make sure that the family is not consumed by special needs totally. It’s difficult juggling additional financial needs for therapies, treatments, supplements etc. and we find that many marriages undergo so much strain that they break-up (the divorce rate within the global autism community is very high). So couples must prioritize nurturing their relationship, in addition to ensuring that all kids receive the same attention to avoid sibling jealousy which naturally occurs when it appears everyone is consumed by the needs of the child with autism to the neglect of the siblings. It is a super complex balancing act of all relationships in the family, both nuclear and extended.
Tell me about the Autism Awareness Not for Profit Advocacy Group you founded.
The organization is called The Child Restoration Initiative (CRI) and we are a registered non-profit educational advocacy group established by reform-minded parents in response to the dearth in educational services for children and young adults with special needs in the Nigerian education system. CRI grew out of and was inspired by my personal experience with my son as well as my encounter with other families in the course of his diagnosis.
We had gone for a hearing test at the Army Audiological Centre (a government establishment) and it was the first time I was meeting people from low income families with children with special needs. I was shocked and moved by the level of ignorance surrounding the origin or nature of their children’s challenges, it was heart wrenching to see how helpless and hopeless these families felt. One of the mothers lamented about her situation and how bleak the future appeared for her daughter. She talked about how she often prayed for God to ‘take’ her daughter so she could have some peace in her life. She was a petty trader and her husband was a chauffeur and they had four other kids to cater for on their low income. She didn’t even understand enough of what was wrong with her daughter to help her; she didn’t have anybody to care for her; they had been sent away from the state sponsored disability program so she had resorted to locking up the child in a room at home every day while they went about their daily needs. My encounter with her and other families with similar or worse stories was extremely confronting for me and as a result I couldn’t sleep for days. My thoughts and pray
ers were with these families and after much soul searching and tussling in my heart, it was clear to me that there was a great need for an organisation with the singular purpose of driving advocacy for children with special needs from low income families.
What we do:
- CRI campaigns for the enforcement of existing legislation at the state and federal level which ensures the provision of free, tailored education and related services for children with special needs within the public school system as guaranteed in the different laws and treaties which we are signatory to.
- We campaign to increase awareness about autism and the importance of early intervention in autism treatment.
- We provide information and referrals about autism care and treatment nationally via an online group page called Nigerians for Autism, seminars, workshops and various national media.
- We also campaign for peer autism awareness and acceptance in primary schools within the metropolis with our ‘Different but the same’ campaign where we speak to young children about their peers who are different. Every child receives a copy of an illustrated children’s book, which I authored for keeps.
- We also campaign for churches and other places of worship to establish a Special Needs Program tailored for children with special needs and their families.
- We equally operate a small support network for low income families that are unable to afford the services needed for the care of their special needs child.
- We have supported numerous families privately and in partnership with individuals and other NGO’s and we hope to further extend our reach.
- We ‘adopted’ a special needs unit in one of our public schools and currently provide them with learning support while working on using it as a pilot scheme to show the government how a national scheme can be run.
What is the current level of awareness about autism in Nigeria and what kind of support is available?
The level of awareness about autism right now is very low. Apart from the major cities of Lagos, Abuja and Port Harcourt, there is very little awareness spread over the nation. Even in the aforementioned cities there is a marked dichotomy in awareness between low and high income families. Unfortunately too, we do not currently have any government support programs as you would find in other nations of the world. From our investigations, only Lagos State seems to have a defined policy for what they call disability education but even that is not functioning properly. It is underfunded and over populated and there are limited staff and resources to have any effect whatsoever. The situation is very bleak really, the services that do exist are private and are extremely expensive and are therefore not accessible to the majority of the people. There is still so much to be done, we feel that it is our duty as parents to be the voice for the kids so we can save a generation of children whose potentials will never be explored or fulfilled if we continue on the same path.
How do you balance work + family + public commitments + time for yourself?
Like any other mum really, my priority of course is my family but I make sure I make the time to attend to my public commitments and also for myself. I have learnt the hard way (after having two very serious health scares – a near stroke and a high blood pressure) how important it is that I actually learn to take care of myself. Research has shown that mothers of children on the spectrum experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions, so I must emphasise the importance for other ‘warrior’ mamas out there.
Take us through your typical workday.
My daily activity has varied over the years based on where we are at and it continues to evolve too. At the moment my routine has been – I get up and go for a run, get the boys ready for school, drop them off and it’s time for CRI activities. I spend a lot of time on the road and at meetings but I endeavour to make sure I am done in time for school run. After homework is done, I work with my son (the one on the spectrum) till round 5.30pm where he takes an outdoor break. We resume at 7pm for another hour and a half of work before he goes off to bed and I take the rest of the time to round up on all my other activities. This regimen varies depending on my public engagements and other commitments.
Do you ever get discouraged? How do you overcome this feeling to stay focused?
Of course there are moments when I get discouraged; I am a human being after all. I especially get discouraged if there is a particular symptom or crisis that we are battling with. Three things that help me are 1) My faith and 2) My support group. During low times I dig deep and draw from my faith. I look to God from where my help comes. I am very expressive about my fear, angst and source of confusion or discouragement in (what I have over the years come to refer to as) a ‘Davidic’ manner. There are lots of encouraging words in the Bible and lyrics of praise songs and I ‘feast’ on them. This helps me lose focus of my fears and worries. I also reach out to my ‘sisters’ – fellow warrior mums who have walked the trail and we encourage each other.
How do you approach meal planning and what are your top 3 dinner recipes that keep everyone in the family happy?
A lot of thought has to go into our meals because of the peculiar dietary needs of the family. For instance, my son on the spectrum is on a different diet from the rest of us and also has a limited range of food. A lot of emphasis and preference is placed on healthy, GMO-free (as much as is possible to detect) meals but the dinner meals that would cut across board in the house will be Jollof Rice, Chicken and Chips and Fried Plantain.
What has being a mum taught you and what do you find most rewarding about being a mum?
I finally understand what it means to love unequivocally. I have learnt to be patient and I am a completely different woman than I was before I had kids. My priorities are totally changed. It is most rewarding watching my boys growing into remarkable, well mannered, kind, caring and God-fearing gentlemen. That smile on their face when they grab you in a hug and tell you ‘they love you’, ah!!! Nothing beats that.
What is the last book you really loved?
A really dramatic book called The Light Between Oceans by M.L. Stedman, a great book about right and wrong and how sometimes they look the same.
Thanks for sharing your amazing story, Nneka. I am inspired by your passion, determination and faith.