Sometimes, the best blog post on a subject is made of the words from someone directly involved and this interview could not have come at a better time. Meet my friend Lola, longtime childhood friend and huge blog fan. I just want one person who reads this to relate to it, and get the real sense…that many other people out there have dealt with whatever you are presently dealing with closely, and are winning.
Me: so, i'm doing a series of interviews and I’d be glad to chat with you though on anything you're comfortable sharing
Lola: shoot
Me: what exactly do you do for a living?
Lola: practice law largely, I freelance as referee, cook, nurse......name it
Me: LOL @ your freelancing jobs...I guess that’s what every mum does. Okay. With a NGO? Or private practice?
Lola: private practice (new at it), been in NGO for the better part of my working life
Me: that much I remember @ NGO. What was that like? And why did you leave?
Lola: interesting, but the last one I was at had no future for me career-wise so I decided to try my hands at what I was trained for, see if I had any hope as a lawyer
Me: so what was the NGO about? Was it your idea? Or you joined an existing one?
Lola: I joined an existing one. It focused on kids with special needs particularly autism. The objective of the org was to help people understand what autism was about and help families and kids with the condition thrive in spite of challenges
Me: really? I recall you had asked me to write about it sometime ago? Why was that?
Lola: yeah to help with advocacy. April is autism awareness month world over and I thought I could take advantage of your widely read blog to do some basic advocacy
Me: is there a particularly personal reason you joined? Or you just wanted to further a societal cause?
Lola: yes! My Justin is autistic. The moment he was diagnosed I made a conscious (albeit highly contested decision) to use my NGO experience to further the cause especially because of the challenges I faced. People know next to nothing about it especially those who should know - doctors, teachers and very 'enlightened' persons
Me: but don't you think that the best form of advocacy would be from parents being willing to talk about it? That the secrecy with which it is handled doesn't help the cause?
Lola: It’s not that parents don't talk; I know from experience that talk is cheap…and because the condition doesn’t usually present itself physically, it is hard to make people understand.
Me: at what point did it occur to you that you may be dealing with autism? And did you ever meet it along your life's path before you became a mum?
Lola: I NEVER knew I was dealing with autism. I recognized odd behaviors but as a new mum I wasn’t too sure. My mum also helped because she expressed some concern when he was about 8 months. But when there were no words at 18 months, I sought a doctor's opinion. I think the diagnosis was divine intervention because the doctors I met subsequently tried to question the diagnosis. The minute he was diagnosed and I read up on it. I was sure it was it.
Me: I come from a strong Pentecostal background where everything can be turned around with prayer, fasting and some olive oil. Were you under pressure to use spiritual methods? Did you crack under the pressure?
Lola: not for one second. For that I am very grateful for my hubby, parents and parents in-law but I had to convince them we were dealing with autism. There was the initial denial of course with every one of them being very enlightened.
The only thing I had heard of autism before the diagnosis was what I saw in ‘rain man’ so I also hoped he had some genius streak
Me: LOL @ genius streak. you sound like you were voltron the entire time? Didn’t you ever panic? cry? Ask God the "why me" question?
Lola: ahhhhh I cried o. I cried the entire time. In fact I clearly remember crying throughout the day I got the diagnosis. I still don’t know how I did it but after he saw the doctor, I sent him home, attended my ante-natal clinic (I was heavily pregnant with my second child), went to the office, sent my boss a mail asking for my maternal leave etc…all these were done in tears. How I managed not to walk onto expressway, I’ll never know. I constantly prayed and questioned God at the time. I think I wrapped up my denial phase pretty quick so I could sufficiently take on the naysayers around me plus baby number 2 was due any day and I had to save some panicking for him too: like “what if this 2nd baby is also autistic because it is a genetic thing?”
Me: wow @ 2nd baby. That’s worrisome. Most people in that situation would not think about "reading"...what did you read exactly? And how did you sift the facts from cultural folklore?
Lola: i browsed the net mostly for info. There’s so much helpful, free information out there as people around the world face the same concerns.
Me: do you feel embarrassed by your autistic son's behavior in public? Be honest
Lola: oh yes! when he decides to go berserk or laugh uncontrollably...there's a whole list but he is more aware now and can be even better behaved than his little brother when we go out most times. Also, over time we have learnt to predict what could trigger those actions and preempt them as best we can.
Me: does that make you overly defensive of him? Or feel the need to hide him when people come around? Or you just expect them to understand?
Lola: nooooo not at all. I try to explain his actions where necessary without coming all clean, at his age you can get away with that. I can be defensive of him as well. I try to keep my close friends, family and anyone who deals closely with him informed of his condition.
Me: two more questions: does autism reduce a mother’s love for her child? And do you think very young mothers forced into marriages can cope?
Lola: a mother can get overly defensive so no, I don’t think a mother's love could decrease as a result of the condition. Without support marriages don’t stand a chance. Both parents have to be on the same page (or almost the same page) because one person taking it harder than the other can be a problem and therapies can be expensive so that can strain marriages too. Prayers have played a huge role too, constantly seeking God’s help and peace because it can get overwhelming. We have learnt to do what we need to do and leave the rest to God. It is a process that can’t be forced.
Me: last question: where does an over whelmed parent go for help...especially when relatives insist on going the "traditional route" for a "cure"
Lola: That’s why I have been on this mission to start a support group for parents. Information sharing is very powerful. I don’t know how effective it can be for resisting family pressures but it helps a great deal to have the support of those who understand and are making things happen for themselves.
Me: how do people join this support group?
Lola: i haven’t started it yet. it is one of my numerous plans that require actualizing. I hope to start with a blog and take it from there.
Me: thank you so much for being so forthright...it cannot be easy talking about something this personal. i hope someone somewhere is helped by it.
Lola: That’s why I’m happy to do this
Me: i went emotional and forgot to ask the important questions. so forgive me, that can’t be the last question. what should a young mother look out for when a child shows early signs of autism'?
Lola: no, you didn’t get emotional; you were more interested in my reaction to the diagnosis which is also important. they say no two autistic kids are the same but there are general red flags: the most obvious is speech (little or none), some kids have speech but talk funny like echoing words or repeating themselves but speech is one red flag. Then repetitive behaviors like spinning, flapping hands, humming, rocking the body may indicate… my kid used to be a spinner. Also there is the lack of emotion and I remember wondering why he wouldn't smile back at me as a baby. then he played weird…he loved to run around but he never actually played with other kids, he played around them and seemed just ok with that. i got to know later that autism affects their social skills.
Me: the symptoms are a lot, and many pretty obvious early on...how come its still so difficult to identify?
Lola: parents are intuitive and know when something is not right. that is why it is important to be informed and get help. medical practitioners don’t help when they wave off your concerns. like i said these kids look just fine till they present some odd behavior so people find it hard to believe that there is a challenge. plus some parents are in denial too. i have heard quite a number say their child just has problems with his speech while seemingly glossing over the other issues. then there are family, friends and church members who would tell you not to ‘claim’ such for yourself but it is what it is
Me: very true. it is what it is…but when does it end? when does the child grow out of autism?
Lola: oh sadly it doesn’t. you can manage the symptoms and make huge gains over the years but the kid will always have to put more effort into what we call ‘acceptable behavior’. with a lot of work, these kids can grow into somewhat independent functional adults but the intervention is easier when it starts early. you can fix speech in most cases with therapy but even with the most high functioning autistic, sarcasm may always be an issue because they take words literally. have u seen the series 'big bang theory'? Sheldon's behavior in that show will give you an insight to challenges that a very high functioning autistic person could still face. social cues are basically lost on them.
Me: i’ve seen big bang theory! excellent show
Lola: and you’ve seen Sheldon? he isn’t just weird, he has a mild form of autism referred to as aspergers syndrome. but then again it also has the media hype of autism being some genius streak. just as we have neuro-typicals who are geniuses, we also have people with autism who have some genius in them. now one thing that rings true for them is that they can be hyper-focused on anything they have an interest in and therein lies the genius streak theory. so if for instance your kid loves art or music, he will keep at it and be fantastic at it. if he takes an interest in trucks or airplanes, he'll fixate on it till he knows all that there is to know about it
Me: Wow.
Lola: well to round off (we can’t discuss autism in one sitting), a diagnosis is good but not as important as getting help. if you notice behavioral problems or speech issues, get on it asap. read widely, ask questions, get support, pray hard and in all do what feels right. don’t push yourself, the kid or other family members to the brink. its a journey not a battle.
Me: wow. i guess my job is done if anyone reading this now knows they're not alone, what to watch out for, and where to go for help...and i couldn’t do it without your help. Thanks a million.
Lola: the pleasure was all mine.
END OF INTERVIEW. EDITOR’S NOTE.
Autistic children do not need pity, just understanding and empathy. If you are a parent or caregiver of one of the estimated 1.2 million Autistic persons in Nigeria, please be informed that early intervention makes a world of difference. You may approach any of the following for more information:
National Society for Autism, Nigeria (NASAN)
27 Libreville Street, Off Aminu Kano Crescent
Wuse II, FCT Abuja
NIGERIA
Email: info@societyforautismnigeria.org
Website: http://www.societyforautismnigeria.org
NWATU Autism Foundation
N0 4, Idowu Rufai Street, Ago Palace Way-Okota -Lagos
P.M.B 039, Festac Town-Lagos
NIGERIA
Tel : 00234-1-8992331/00234-8058458995
Email: autism4nigeria@yahoo.co.uk
Autism Associates
1 Bode Thomas Street, off Bode Thomas Road
Onipan, Lagos
NIGERIA
Tel: 234-1-8506354
Email: info@autismassociatesnigeria.org / autismassociates@yahoo.co.uk
Website: www.autismassociatesnigeria.org
The Zamarr Institute
LEA school, Patrick Bokkor street, behind O’neal center, Jabi ,
Abuja NIGERIA
Tel: +2348058649760, 08033143671, 08027653255
Email: info@thezamarrinstitute.org, zamarrinstitute@ yahoo.com
Website: www.thezamarrinstitute.org
Centre for Autism and Developmental Disabilities (CADD Nigeria)
1 Lolaka Omo Street, Off Nnebisi Road
Asaba, Delta State
NIGERIA
Email: caddng@yahoo.com
OLG Health Foundation and Autism Centre8 Faith Avenue
Woji, Port Harcourt, Rivers State
NIGERIA
Tel: 234-8030564409
Email: Loladi_izuwah@yahoo.co.uk
The Start Right Centre
Surulere, Lagos
NIGERIA
Website: http://www.autism-smile.co.uk/nigeria/
Patrick Speech and Languages Centre
13b Fani Kayode Street,
GRA Ikeja,
Lagos.
Tel. + 234-1-8190 0786
Mobile. +234-803 301 9865 +234-0705 502 8215
EMail. dakande@pslcautism-ng.org, dakande2002@yahoo.com
Website. www.pslcautism-ng.org
Me: so, i'm doing a series of interviews and I’d be glad to chat with you though on anything you're comfortable sharing
Lola: shoot
Me: what exactly do you do for a living?
Lola: practice law largely, I freelance as referee, cook, nurse......name it
Me: LOL @ your freelancing jobs...I guess that’s what every mum does. Okay. With a NGO? Or private practice?
Lola: private practice (new at it), been in NGO for the better part of my working life
Me: that much I remember @ NGO. What was that like? And why did you leave?
Lola: interesting, but the last one I was at had no future for me career-wise so I decided to try my hands at what I was trained for, see if I had any hope as a lawyer
Me: so what was the NGO about? Was it your idea? Or you joined an existing one?
Lola: I joined an existing one. It focused on kids with special needs particularly autism. The objective of the org was to help people understand what autism was about and help families and kids with the condition thrive in spite of challenges
Me: really? I recall you had asked me to write about it sometime ago? Why was that?
Lola: yeah to help with advocacy. April is autism awareness month world over and I thought I could take advantage of your widely read blog to do some basic advocacy
Lola: yes! My Justin is autistic. The moment he was diagnosed I made a conscious (albeit highly contested decision) to use my NGO experience to further the cause especially because of the challenges I faced. People know next to nothing about it especially those who should know - doctors, teachers and very 'enlightened' persons
Me: but don't you think that the best form of advocacy would be from parents being willing to talk about it? That the secrecy with which it is handled doesn't help the cause?
Lola: It’s not that parents don't talk; I know from experience that talk is cheap…and because the condition doesn’t usually present itself physically, it is hard to make people understand.
Me: at what point did it occur to you that you may be dealing with autism? And did you ever meet it along your life's path before you became a mum?
Lola: I NEVER knew I was dealing with autism. I recognized odd behaviors but as a new mum I wasn’t too sure. My mum also helped because she expressed some concern when he was about 8 months. But when there were no words at 18 months, I sought a doctor's opinion. I think the diagnosis was divine intervention because the doctors I met subsequently tried to question the diagnosis. The minute he was diagnosed and I read up on it. I was sure it was it.
Me: I come from a strong Pentecostal background where everything can be turned around with prayer, fasting and some olive oil. Were you under pressure to use spiritual methods? Did you crack under the pressure?
Lola: not for one second. For that I am very grateful for my hubby, parents and parents in-law but I had to convince them we were dealing with autism. There was the initial denial of course with every one of them being very enlightened.
The only thing I had heard of autism before the diagnosis was what I saw in ‘rain man’ so I also hoped he had some genius streak
Me: LOL @ genius streak. you sound like you were voltron the entire time? Didn’t you ever panic? cry? Ask God the "why me" question?
Lola: ahhhhh I cried o. I cried the entire time. In fact I clearly remember crying throughout the day I got the diagnosis. I still don’t know how I did it but after he saw the doctor, I sent him home, attended my ante-natal clinic (I was heavily pregnant with my second child), went to the office, sent my boss a mail asking for my maternal leave etc…all these were done in tears. How I managed not to walk onto expressway, I’ll never know. I constantly prayed and questioned God at the time. I think I wrapped up my denial phase pretty quick so I could sufficiently take on the naysayers around me plus baby number 2 was due any day and I had to save some panicking for him too: like “what if this 2nd baby is also autistic because it is a genetic thing?”
Me: wow @ 2nd baby. That’s worrisome. Most people in that situation would not think about "reading"...what did you read exactly? And how did you sift the facts from cultural folklore?
Lola: i browsed the net mostly for info. There’s so much helpful, free information out there as people around the world face the same concerns.
Me: do you feel embarrassed by your autistic son's behavior in public? Be honest
Lola: oh yes! when he decides to go berserk or laugh uncontrollably...there's a whole list but he is more aware now and can be even better behaved than his little brother when we go out most times. Also, over time we have learnt to predict what could trigger those actions and preempt them as best we can.
Me: does that make you overly defensive of him? Or feel the need to hide him when people come around? Or you just expect them to understand?
Lola: nooooo not at all. I try to explain his actions where necessary without coming all clean, at his age you can get away with that. I can be defensive of him as well. I try to keep my close friends, family and anyone who deals closely with him informed of his condition.
Me: two more questions: does autism reduce a mother’s love for her child? And do you think very young mothers forced into marriages can cope?
Lola: a mother can get overly defensive so no, I don’t think a mother's love could decrease as a result of the condition. Without support marriages don’t stand a chance. Both parents have to be on the same page (or almost the same page) because one person taking it harder than the other can be a problem and therapies can be expensive so that can strain marriages too. Prayers have played a huge role too, constantly seeking God’s help and peace because it can get overwhelming. We have learnt to do what we need to do and leave the rest to God. It is a process that can’t be forced.
Me: last question: where does an over whelmed parent go for help...especially when relatives insist on going the "traditional route" for a "cure"
Lola: That’s why I have been on this mission to start a support group for parents. Information sharing is very powerful. I don’t know how effective it can be for resisting family pressures but it helps a great deal to have the support of those who understand and are making things happen for themselves.
Me: how do people join this support group?
Lola: i haven’t started it yet. it is one of my numerous plans that require actualizing. I hope to start with a blog and take it from there.
Me: thank you so much for being so forthright...it cannot be easy talking about something this personal. i hope someone somewhere is helped by it.
Lola: That’s why I’m happy to do this
Me: i went emotional and forgot to ask the important questions. so forgive me, that can’t be the last question. what should a young mother look out for when a child shows early signs of autism'?
Lola: no, you didn’t get emotional; you were more interested in my reaction to the diagnosis which is also important. they say no two autistic kids are the same but there are general red flags: the most obvious is speech (little or none), some kids have speech but talk funny like echoing words or repeating themselves but speech is one red flag. Then repetitive behaviors like spinning, flapping hands, humming, rocking the body may indicate… my kid used to be a spinner. Also there is the lack of emotion and I remember wondering why he wouldn't smile back at me as a baby. then he played weird…he loved to run around but he never actually played with other kids, he played around them and seemed just ok with that. i got to know later that autism affects their social skills.
Me: the symptoms are a lot, and many pretty obvious early on...how come its still so difficult to identify?
Lola: parents are intuitive and know when something is not right. that is why it is important to be informed and get help. medical practitioners don’t help when they wave off your concerns. like i said these kids look just fine till they present some odd behavior so people find it hard to believe that there is a challenge. plus some parents are in denial too. i have heard quite a number say their child just has problems with his speech while seemingly glossing over the other issues. then there are family, friends and church members who would tell you not to ‘claim’ such for yourself but it is what it is
Me: very true. it is what it is…but when does it end? when does the child grow out of autism?
Lola: oh sadly it doesn’t. you can manage the symptoms and make huge gains over the years but the kid will always have to put more effort into what we call ‘acceptable behavior’. with a lot of work, these kids can grow into somewhat independent functional adults but the intervention is easier when it starts early. you can fix speech in most cases with therapy but even with the most high functioning autistic, sarcasm may always be an issue because they take words literally. have u seen the series 'big bang theory'? Sheldon's behavior in that show will give you an insight to challenges that a very high functioning autistic person could still face. social cues are basically lost on them.
Me: i’ve seen big bang theory! excellent show
Lola: and you’ve seen Sheldon? he isn’t just weird, he has a mild form of autism referred to as aspergers syndrome. but then again it also has the media hype of autism being some genius streak. just as we have neuro-typicals who are geniuses, we also have people with autism who have some genius in them. now one thing that rings true for them is that they can be hyper-focused on anything they have an interest in and therein lies the genius streak theory. so if for instance your kid loves art or music, he will keep at it and be fantastic at it. if he takes an interest in trucks or airplanes, he'll fixate on it till he knows all that there is to know about it
Me: Wow.
Lola: well to round off (we can’t discuss autism in one sitting), a diagnosis is good but not as important as getting help. if you notice behavioral problems or speech issues, get on it asap. read widely, ask questions, get support, pray hard and in all do what feels right. don’t push yourself, the kid or other family members to the brink. its a journey not a battle.
Me: wow. i guess my job is done if anyone reading this now knows they're not alone, what to watch out for, and where to go for help...and i couldn’t do it without your help. Thanks a million.
Lola: the pleasure was all mine.
END OF INTERVIEW. EDITOR’S NOTE.
Autistic children do not need pity, just understanding and empathy. If you are a parent or caregiver of one of the estimated 1.2 million Autistic persons in Nigeria, please be informed that early intervention makes a world of difference. You may approach any of the following for more information:
National Society for Autism, Nigeria (NASAN)
27 Libreville Street, Off Aminu Kano Crescent
Wuse II, FCT Abuja
NIGERIA
Email: info@societyforautismnigeria.org
Website: http://www.societyforautismnigeria.org
NWATU Autism Foundation
N0 4, Idowu Rufai Street, Ago Palace Way-Okota -Lagos
P.M.B 039, Festac Town-Lagos
NIGERIA
Tel : 00234-1-8992331/00234-8058458995
Email: autism4nigeria@yahoo.co.uk
Autism Associates
1 Bode Thomas Street, off Bode Thomas Road
Onipan, Lagos
NIGERIA
Tel: 234-1-8506354
Email: info@autismassociatesnigeria.org / autismassociates@yahoo.co.uk
Website: www.autismassociatesnigeria.org
The Zamarr Institute
LEA school, Patrick Bokkor street, behind O’neal center, Jabi ,
Abuja NIGERIA
Tel: +2348058649760, 08033143671, 08027653255
Email: info@thezamarrinstitute.org, zamarrinstitute@ yahoo.com
Website: www.thezamarrinstitute.org
Centre for Autism and Developmental Disabilities (CADD Nigeria)
1 Lolaka Omo Street, Off Nnebisi Road
Asaba, Delta State
NIGERIA
Email: caddng@yahoo.com
OLG Health Foundation and Autism Centre8 Faith Avenue
Woji, Port Harcourt, Rivers State
NIGERIA
Tel: 234-8030564409
Email: Loladi_izuwah@yahoo.co.uk
The Start Right Centre
Surulere, Lagos
NIGERIA
Website: http://www.autism-smile.co.uk/nigeria/
Patrick Speech and Languages Centre
13b Fani Kayode Street,
GRA Ikeja,
Lagos.
Tel. + 234-1-8190 0786
Mobile. +234-803 301 9865 +234-0705 502 8215
EMail. dakande@pslcautism-ng.org, dakande2002@yahoo.com
Website. www.pslcautism-ng.org
Comments
Brave one from Lola, apart from being her first child, she's a campaigner for the cause... Lola, thanks for being the best mum to Justin.
Did Lola say "widely read blog"??? Hahahahaha!
Oga Editor, nice job, but got a lil bored towards the end especially after you said "two more questions" and went on to ask 8! As a professionally trained journalist, I score you 5/10! *Big Grin*
I remember during my service days in Abeokuta (a neighbour in the down flat has an autistic son but wouldn’t let anyone close. If you as much as say hi or want to play with the boy, she would act all defensive – stare you down et all; then bundle the boy inside in a twinkle of eye). It was so depressing, considering the fact that I recognized the problem and my flatmate was a medical personnel – I mean look at what she would have gained is she had allowed us to educate her in the little way we can.
Right now, I am thinking of the boy and what he will turn out to be if the mother continues the same way. My take to everyone out there is ....please stop relating everything to spiritual and dig up what you can on the situation firsthand. And to someone who is dealing with autism or someone who knows someone dealing with it, you can check up:
TLP Centre – 18 Chris Maduka Drive, Lekki phase 1.
01-8401383 www.tlpcentre.com.
@WM: thanks for finding the time always. i appreciate your comments and helpful criticism. i didn't want to over-edit the interview and honestly remembered the vital questions after...but point taken with gratitude.