For the second instalment of the Redefining Wonder Woman series, I’m interviewing one of my oldest friends, Larry. She has been kind enough to share her experience with me about raising her autistic child, Lanre. It has been a challenging journey for Larry, her husband, Kayode and Tobi, their last born. I hope you find it encouraging if you are in a similar circumstance and enlightening if you are not.
RWW: When did you discover Lanre was autistic?
Larry: Well Kayode and I always felt something was a bit “off” with Lanre’s development, more so my husband. I was a little bit more optimistic and kept saying “oh he’s just a bit slow, he’ll catch up with his peers soon”. Well my son turned two, still wasn’t saying much and was having the most uncontrollable tantrums. We eventually decided to seek medical help and got the professionals involved in our case. Two months after his fourth birthday, we received the official diagnosis that he was autistic.
RWW: How did that make you feel?
Larry: My husband and I attended the official diagnosis meeting together. I have friends and relatives that have all described the moment when they receive devastating news such as a death. Well, that is exactly how I felt; like I had been hit by a bus. The room became a blur, the professionals’ voices and faces all became blurry. I felt like I was floating on cotton wool. I must have started crying at some point because I was handed a wad of tissues. I literally sat there in shock and could no longer contribute to the meeting. All that kept running through my head was that I had lost my beautiful baby boy who would now no longer have a normal life and would be dependent on his parents for the rest of his life. I recall speaking to my family that night and everyone being so down.
RWW: How did it alter your life?
Larry: After the initial shock of getting the confirmation, I picked myself up and prayed to God (I am a Christian) about the situation. I then started to read, read, read and then did some more reading! I decided to learn all I could about this mysterious condition that people automatically associate with the film “Rain Man”. I am ashamed to say that I turned my son into a bit of a guinea pig trying out each new treatment that I read about to see if it had any effect on Lanre’s condition. We also had to completely address our home / school routine and also monitor what he ate and drank.
RWW: What is your coping mechanism?
Larry: We found this wonder drug (our Lorenzo’s oil) called Equazen that is a mixture of omega 3, omega 6 and evening primrose oils. Lanre takes it daily and he will most probably be on it for the rest of his life. We are also very careful not to change his routine suddenly as it drives him mad.
RWW: Tell me a bit more about his routine. What does a typical day involve?
Larry: Well we have fairly normal days now, the early days were pretty rough. With autism, routine is very important and must be regimented. Children on the spectrum detest change, and routine changes must be managed effectively. Lanre wakes up at the same time every day (6.00 AM while we were in the UK, 7.00 AM now in Nigeria), has four crackers for breakfast (can’t be more or less) and has noodles for lunch. We take the same route to the school every day and so it goes. If you think about it, human beings are naturally creatures of habit, able to adapt if need be to sudden routine changes. The main difference in autism sufferers is that the brain cannot easily deal with these sudden changes and goes into panic mode.
RWW: Can you describe your roughest day with Lanre?
Larry: We have the occasional days when Lanre will just not do what he is expected to do. I remember once we were taking the train to the shopping centre and we needed to change trains. He wanted us to get into the first carriage but we ended up going into the middle carriage and he went absolutely ballistic. Kicking, thrashing and rolling on the floor; being completely uncontrollable. We ended up having to get off the train and going back home because he was so upset.
RWW: You and your family recently emigrated to Nigeria. So how did he cope with that major upheaval?
Larry: Initially it was quite tough, as I explained earlier Lanre hates change. He berated my husband and I daily for bringing him to Nigeria. Six months on, I am pleased to report that he loves it although he still has the occasional meltdown but we are now able to cope with that.
RWW: There is very little support for autistic children in Nigeria isn’t there?
Larry: Nigeria is definitely miles behind other developed economies such as The U.K and U.S.A. However, Kayode and I very quickly discovered that with this condition, it’s the parents and not the professionals that make all the difference. We have therefore been coping quite well and Lanre also attends a mainstream school that understands the condition.
RWW: What are people most ignorant about in your experience?
Larry: Oh my word don’t get me started! People think it’s a disease that their own children can catch; they think that my son is gifted in some amazing way (this is the biggest myth about autism) or they think that my son just needs stronger disciplining.
RWW: What have you found most frustrating?
Larry: Initially because we knew nothing about the condition, my son was literally uncontrollable. We couldn’t take him shopping, meltdowns came out of nowhere (I remember one particularly tough time on the DLR in London, his diet drives me mad (mostly bland foods). All these things I have now learned to cope with and we plan, plan, plan in advance with my Son.
RWW: What do you do on the tough days?
Larry: The tough days are now few and far between, praise God. I do rely heavily on my faith to get me through the bad days and I always take a picture of myself on the rough days, you have to smile when you take a picture don’t you 🙂
RWW: Any practical tips for families who have just received this diagnosis about their child?
Larry: I am not going to sugar coat this. You will feel like it’s the end of the world. The key to controlling this condition is knowledge acquisition and quick intervention. Do your research and do not believe everything the professionals tell you. Be prepared to do most of the work yourself, after all it is your child!
RWW: How have you coped with being a full time working mum and caring for your son?
Larry: It has being quite tough. In my case we are lucky that my husband is self employed and so is able to be a bit more “involved” in caring for Lanre. In any other situation I probably would have had to give up my job.
RWW: How has this changed you as a person?
Larry: I am definitely a more tolerant person, and tend not to let things affect me as much. I have also developed a “sixth sense” when it comes to identifying other children with autistic traits. It’s amazing how many parents are in denial!
RWW: What impact has this had on your marriage, if any?
Larry: In the early days (before we received the diagnosis) Lanre used to wake up at 4.00 AM screaming and crying and banging his head on the floor. My husband and I would be tired and cranky, shouting at Lanre and each other – it was horrible. We now support each other and know when to take over when dealing with Lanre if need be.
RWW: What advice do you have for those of us who have never met an autistic child?
Larry: As we now have a handle on Lanre’s behaviour, we are able to have a pretty “normal” life. I would say treat them with kid gloves and please do not be so quick to blame the parents for spoiling their child. People on the spectrum are just like you and I, they just need you to understand and give them the opportunity to have a normal life.
RWW: Thank you Larry for sharing your story with us.
Please note that the content of this post is based on an individual’s experience and is in no way a substitute for medical advice or treatment.