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Let’s Talk About Autism

November 16, 2015

By Nyema Ndu-Iheme

I was in a room and the question was asked; “what is autism”? The answers I heard were much like these…. “Abnormal behaviour in a child”; “a child that is behaving queer or weird”; “mental illness in a child”; “a child that is slow and cannot understand anything”… and they went on and on. With each definition I heard, I tried to ward off the dull pain in my chest as the words hit hard, so hard I struggled to believe it.

I asked myself “so is this how they see my son”? but I fought back the tears! I told myself, my son is not queer/weird, he doesn’t have a mental illness, he is not abnormal and he definitely isn’t slow! One thing was certain – he does understand when I speak to him. But then again, I thought to myself as I sat in the room, with a fully inquisitive mind –  What then is autism…?

According to autismspeaks.org, “autism spectrum disorders (ASD) and autism are both general terms for a group of complex disorders of the brain development”. Again I asked myself – does this define my child? The answer is NO. All I know is that he is “different”, but aren’t we all? With different abilities and disabilities. So NO, autism is not a death sentence, neither is it the end of the world nor is it a curse – I choose not to accept that, not for my child!

There is currently no single identified cause or cure for autism and just like your child could have malaria or asthma or nut allergies, any child could have autism. It does not select sufferers based on race, geographical location, economic status or religious beliefs and it is definitely not the fault of the mother, father, mother-in-law, family members, a party the child attended at age one or the child’s nanny!

How do I know when to take my child for an evaluation?

This is a huge question! Sometimes as a mum, you know something just isn’t right with your baby even before you go to the doctor but try not to panic. From experience I can tell you why – It doesn’t do much to help, trust me, I know – been there, done that. But here are a few signs that may tell you it’s time to see a qualified paediatrician.

Autism Red flags:

No big smiles or warm expression at 6 months or after.

No back and forth sharing of smiles and sounds or facial expressions at 9 months.

No blabbing at 12 months.

No back-and-forth gestures such as pointing, showing, reaching or waving at 12 months.

No words by 16 months.

No meaningful two-word phrases (not including imitation or repetition) at 24 months.

Any loss of speech, blabbing or social skills at any age.

Source of red flags: https://www.autismspeaks.org/what-autism/learn-signs

Life after you know…

What did I do wrong? What could I have done differently to prevent this? How do I fix this? Do I tell people? Oh my God! My family! Where do I start from?  Do I get a second opinion? Is this true? No! Not my baby! Certainly not my child! God I just want to die, why me? Why my baby?!

As you go through the emotional roller-coaster and stages of grief, then comes denial, then shock then the grandmaster of them all – tears! Like this never-ending shedding of tears that would never stop. Sometimes, I just think Heaven must have opened up its flood gates. Then the prayers and the fasting and the midnight “kabashing” (speaking in tongues) for a miracle, and searching the scriptures to quote more healing portions, attending all kinds of healing programs in church and watching them on TV and laying of hands on your precious little child and casting out the spirit of autism…..

Then comes the stage of acceptance and moving on with the mindset of “hmmmmmm this is my new reality…”. The hardest part in the country we live in (Nigeria) is getting your child accepted into the school you want him/her to go. You get to hear quite a lot of these – “Oh we can’t manage “autistic” children here”; “No, we do not have a Special Educational Needs (SEN) department so we can’t “accept” him/her”; “He/She may be a distraction to the other members of the class”; and, my all-time favourite “Our quota for children with autism is full, but we have space for your “normal” kids”. Boy are we an insensitive society? Honestly, rejection is always hard to deal with and even when these SEN services are available (at half scale in this country) it comes at an unaffordable rate for a lot of people. The price is fixed like this disorder only happens to the rich and because of this, many children do not get the help they need because their parents cannot afford it.

To eat or not to eat...

Most children with autism struggle with eating, going days on end without food. Mealtimes are like being at a war front, where every single spoon successfully swallowed is celebrated like the enemies are starting to retreat! Only to be handed the food warning list for your child with autism by his or her therapist, “no bread, no regular milk, no sugar, no maggi, no regular cookies, no cheese, no ice cream or yogurt, no oat, no wheat, no soy, no regular pasta, no pizza”, etc. No foods containing gluten and casein and gluten/casein free food can be so expensive not to mention when your child craves sugar or salt and wouldn’t want to eat anything else, and I then ask myself – “do I let my child starve”?

Out and about in public…

While dealing with all these, you have to manage the sudden loud cry for no reason visible to you, the meltdowns, the temper tantrums, the “inappropriate behaviour in public” as far as the rest of the world is concerned, the horrible stares and condescending looks by strangers saying “horrible mother who can’t raise her child right! He is just all over the place jumping up and down and screaming and she can’t control him”, sometimes I just want to scream out loud, “he has autism dumbass”. But then I just settle for the stare right back at them that says “ignorant people”.

Even at home

The sleepless nights of squeaks and screams, the speech delays and compulsory home schooling, the chore involved in finding a qualified speech therapist in Nigeria, (clearly a near impossible task), getting your child to participate in family activities and learning to play with his/her siblings and/or next door neighbours’ kids. Learning the art of non-verbal communication and mind reading to know exactly what your non-verbal child is saying or wants…

Having a child with autism will teach you to appreciate and celebrate the little achievements your child makes. You find out that learning to walk up the stairs one foot before the other is not a no-brainier but is actually an act of communication between the left and right part of the brain; potty training doesn’t come naturally, it is taught over and over again for years; understanding that 1 +1 is 2 is actually a complex mathematical equation that requires brain function. That speech and understanding language are controlled by different parts of the brain and on and on.You will learn most of all that being a mum with a child on the autism spectrum is no walk in the park. 

A bit of sunshine on a cloudy day…

However, despite how gloomy things may seem, there is help and hope for children on the autism spectrum. Children with autism can learn and get an education like any other child; though the style of education may be different it is certainly not impossible.It is not always as hard or as sad as it seems, and as much as I have come to know in my almost 4 years walk with autism, it gets a bit easier as they grow and as you also grow and gain experience along the way.

There is also the celebration of every new milestone reached, that honest sweet look in your child’s eyes when you look at him and he holds that stare even if for a second, the brilliant smile of joy when he/she is applauded for doing good, the genuine love in every tight hug he/she gives mummy, learning to rejoice in the little things. Accepting that different doesn’t mean less and diversity spans a wide range of areas of life.

How to get help?

I can only say research, research and more research. Start with reading a book titled “Understanding autism for dummies” by Linda G. Rastelli and Stephen Shore. Other books I have read are “Signs of autism in infants” by Stella Acquarone and “Early intervention and Autism” by James Ball. Join the ‘autism speaks’ (www.autismspeaks.org) network and do remember to take care of the caregiver (you) too. A research published in disabilityscoop.com noted that “Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions”. Speak to someone about your child – there is absolutely nothing to be ashamed of! Someone out there might be able to help you and your child.

In the 5 years plus I have raised my child on the autism spectrum, every single day has begun with a high level of uncertainty and anxiety but through it all, I still see light at the end of this dark tunnel. Above and beyond it all, he is my son and I love him in a million ways and more right through the earth, beyond and back again – your child needs to see it in your eyes that you will be there to support them through their journey and you will have fulfilment as you do , one day at a time.

 

Nyema Ndu-Iheme wrote this piece from Lagos, Nigeria

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From → General, Lifestyle

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