A Nigerian Mum shares the Story of Life with an Autistic Child

The World Autism Awareness Day is in April and this year we reached out to families who caring for and nurturing children with autism.

 

cardinalbolt read Omolade‘s story and we were very inspired!

Sadly, there is still a stigma attached to autism in Nigeria. Lolade was willing to share her story to help educate the public and inspire anyone who is raising a child with autism. However, she maintained that she will like to maintain her anonymity and protect her family. We are very happy to share her story with you and we hope that you find strength and hope in it.

My name is Omolade Efe*, my husband and I are legal practitioners. We had our first child Justin* shortly after we got married and everything seemed pretty fine until my son was diagnosed with autism at 18 months. Before his diagnosis we were a bit worried about some things but nothing prepared us for autism.

Autism

The movie ‘Rain Man’ was pretty much all I knew about autism prior to his diagnosis and for me people with autism were like weird people who have a genius streak. I had some concerns with some behaviours (nothing significant in my opinion) during infancy but I was particularly worried about him not even babbling at 18 months. I had read a baby magazine that featured an article on hearing impairment in kids which made reference to some red flags and not babbling at 18 months was one of them. My mother had also expressed her concerns much earlier about him not responding to his name. She had asked me then to get his ears checked out but I didn’t think he had any problem with his hearing (he reacted to sounds).

First Diagnosis

Following yet another suggestion by a family friend to have his hearing checked, my husband and I decided to dispel this hearing issue once and for all. I took him to the hospital the very next day and what should have been an appointment with an ENT (Ear, Nose & Throat) specialist became a life-changing encounter with a consultant paediatrician. I remember telling her why we were there and I was certain she would dismiss my fears as ‘new mom palaver’. Then she started asking questions after questions and observing him closely, I instantly knew something was wrong. But ‘it appears your son may have autism’ was the farthest thing from my mind. There are no words to describe what I felt going forward from that moment, of course I cried and my brain went into over-drive. The only logical thing I did before leaving her was getting contact details of someone who worked with children with autism.

Our major concern at the point of diagnosis was no babbling or attempt at speech but with the benefit of hindsight, we can say that there were tell-tale signs all along. He was not a social baby, his face never lit up with recognition when I or his dad carried him. He never responded to his name but had a thing for music, he would perk up and crawl or walk wherever the music was coming from. He appeared pretty insensitive to pain; he could bump his head real hard and not so much as whimper. He spun around, flapped his hands, walked on the tips of his toes a little too often. He never had separation anxiety, we could come and go as we pleased. It was also unbelievably easy to wean him off breast milk. He took to cereal without a fuss but that was all he agreed to take until he was about 13 months. He got very excited around children but never played with them, he was fine just running around them. Quite odd huh? We had no clue!

Pre-emtive Measures?

I don’t know if there is some kind of test that can tell if one’s baby will be autistic during pregnancy. I had a very easy pregnancy and delivery as in pretty much uneventful. In my opinion, since autism largely affects behavior and social skills it may be quite difficult to tell at infancy even unless the case is so severe or comes with a medical condition like seizures. My son met all his physical milestones (sitting, crawling, standing, walking etc). On the other hand, my son was the easiest baby to deal with. I was back to work after three months and could comfortably continue breastfeeding exclusively until he was 5 months. He was rather laid back for a baby, not cheerful or playful but seemingly content in his company. He was an extremely picker eater as a toddler and took cereals for a long time (I know now that he was comfortable with the texture). His food choices depended on what texture appealed to him at the time so there was never a constant favourite. We went from the cereal phase to indomie to spaghetti to rice to fries. He is a little more adventurous now and would eye new dishes suspiciously, even sniff them before giving them a try.

What To Look Out For

You will always hear that every child with autism is different and it is very true but there are some general characteristics; some more pronounced or totally absent in others.

Some of which are:
• Displays indifference
• Little or no eye contact
• Indicates need by holding adult’s hand
• Communication difficulties e.g. delayed speech, echolalia
• Inappropriate laughing or giggling
• Sensitivity to sounds, textures, smells
• Engages in repetitive behaviours
• Unusual attachments to certain objects

While we are at it, I would like to highlight what autism is not.

Autism is NOT

- contagious
- a curse
- madness/ lunacy
- a disease; or
- a death sentence

Coping & Dealing With Autism

Raising a child with autism is no walk in the park. My first instinct was to find out much as I could about autism. Like I said earlier, prior to Justin’s diagnosis autism seemed like something that never really happened to real people. All I kept saying at the doctor’s office was ‘where do I go from here?’ Luckily for me, the doctor knew someone that worked with children with special needs and I took the contact details. There was the continuous internet search and all that stuck was ‘no cause, no cure’.

We initially put him in regular Pre-K to get him to relate with children his age but soon realized it was a waste of time and effort. The minders had no clue what they were dealing with and just let him be most of the time. We then made the difficult decision to send him to a special needs school just before he turned 2. It was difficult because other special children were much older and made us wonder about our son’s eventual outcome. A few months into it, there was some difference (nothing major) he was feeding himself, being made to maintain eye contact and he could stay put for a few seconds at a time (short attention span is usually an issue).

Patience is Essential

We had to learn to be patient, we were making gains but they took time to happen. There are so many things parents of neuro-typical children take for granted that we celebrate. My son was a picky eater and would choose foods based on texture and/or smell. So he usually ate 2 or 3 types of foods for a period, then moved on to something else. We had/still have food phases but I have learnt to work around it. You can imagine what toilet training would have entailed. We achieved total toilet training at 4+ and he said his first real word at 5+ (communication is still largely non-verbal though). We have had numerous bumps, ups, downs, lows and what-have-you but we appreciate where we are today and all the support we had along the way. One other thing we learnt was not to stress because we found that therapy worked but rather than niggle over desired outcomes, we prayed and things happened but not necessarily when we hoped.

Support Group

I had the opportunity to work with an organization that works with children with special needs and I immersed myself in that world for a couple of years. I wanted to know more, do more and I think it helped me a lot.

Nigerians are naturally curious and judgmental so yes there is stigma that stems from the fact that your 5 year old should know better than act the way he is or that he isn’t interacting as he should or has that blank look on his face. Most times it is the disapproving looks or the occasional unsolicited tip on how to better handle my child or even a direct reprimand. Thing is, we are more in tune with him now and when we go out, we keep a very close eye on him and try to pre-empt any drama. We are by no means where we hope to be with his development but we have come a long way. Every parent of a child with special needs must develop a thick skin because their kids’ well-being trumps everything else. Many children on the spectrum have sensory issues so crowded noisy places or places with garish bright lights are not very advisable for them.

Parental Role

Family support is the first and the best kind and I thank God I had that to a large extent. As the child grows and new phases come up, it is important to have a circle or group of people that you can share experiences and relate with on that level. Some of the best information I have had over the years came from other parents and professionals in the field. I have been toying with the idea of starting a blog and a support group for parents of kids with autism to share home grown experiences and information.

Parents play the biggest role in this journey; from getting a diagnosis to getting help and keeping on track. We champion our kids’ causes, decide what to do, when to do it and how to do it.

It helps to stay informed and positive. Justin is lucky not to have any associated medical issues with his condition so he doesn’t take any medication besides vitamins and supplements. I maintain that early intervention is so important because you help the child learn or unlearn positive or negative behaviours respectively. For a child with autism, therapy should be incorporated into every waking moment. The pay-off may not come as soon as you would like but it will, eventually.