My Journey with Autism Tope’s story

Meet Temitope, a lovely mum of 3 beautiful Children and a business entrepreneur.

Tope is an old friend and I remember reading a post she put up on her son David’s birthday that struck me. Seeing her now, nothing gives away what she’s been through and is still going through. She is ever radiant and bubbly.

That post made me decide to give an audience to mums around me raising children with special needs. I want it in their own words so people can understand how tough and challenging it is. I also want it to encourage other families that are going through the same situation and are struggling with it.

Maybe we’ll be a bit more patient when we’re out and there’s a hyper child and kinder to all mums, you never know what they’re going through…

Read Topes’ candid story in her own words…

My name is Temitope. I’m a graduate of Business Administration from the University Of Ado Ekiti. I currently work part-time for UPS(United Parcel Service) as an administrator and I also have a passion for FASHION and run a business as well ‘@temitopes_closet’.

I’m sure you are wondering how I balance it all?

MY JOURNEY WITH AUTISM.

After my son was diagnosed in March 2013, The first thing that happened to me was “SHOCK” the way Christianity had been sold to us, I felt there were certain things not allowed to happen to us “CHRISTIANS”. So from a Christian perspective, I felt let down by God and struggled with my faith since then.

All along I was in complete denial of my sons’ condition even though the signs were there. He was my first child and I didn’t know a lot of things back then but the signs were obvious that he was different from other children.

At age 3 when he was diagnosed he already had the 3 key traits of AUTISM:
1. DELAYED SPEECH/NONE VERBAL SKILLS
2. POOR SOCIAL SKILLS
3. OBSESSIVE RITUALISTIC BEHAVIOUR

The second thing that happened to me was I felt like I had been running and suddenly hit a brick wall and everything that was questionable began to be questioned in my life:
1, RELIGION
2, MARRIAGE
3, FAMILY
4, EXISTENCE
5, GOD

It was like my life was over, there’s no other way I could describe it to anyone. It had a huge impact on me as I had to give up my day Job to care of my sons’ needs which meant giving up my professional life and career. There’s no way I can put into words how it felt to be dealt with such a HUGE BLOW. It’s absolutely overwhelming.

The third thing that happened to me was DEPRESSION. I completely lost the will to live and was only existing for my children and husband. I was basically relying on antidepressants to survive!

Very fast I became socially isolated and left on my own. (I knew my real friends immediately). What people see on the outside is different from what’s going on inside. People started judging and calling me names like ‘SNUB, ARROGANT, PROUD’ woman because I wasn’t attending social functions due to hiding my son’s behaviour in public.

My life became a nightmare and I started suffering from sleep deprivation (insomnia). I went to a dark place whilst asking myself questions like:
Will this child talk?
Will he ever have friends?
Will he get married?
Will I have grandchildren?
Will he go to university.?
Will he ever be able to hold down a job?
Will he ever call me MUM or understand what the word mother means?
Will I be responsible for his needs for the rest of my life???

On and on like that, was how my life existed. And to make matters worse I had to stare at my child every day and see a boy who had no emotional connection to me, none verbal with no eye contact.

He was in a different world of his own entirely oblivious to my pain and suffering.

For instance, he used to put his hands in his nappy and if he was soiled and I didn’t get to him on time, he would smear the whole house with his poo. This broke me every time he did it, I would spend hours cleaning the house and trying to get rid of the smell while crying my heart out.

The reality of it all dawned on me and I sank deeper into depression. “I started to resent GOD while I grieved the life my son will never have.” I was constantly having to monitor him round the clock as he had no sense of danger and could harm himself. Basically, I stopped existing as a human being and faded away….completely burnt out.

HOW IT AFFECTED MY FAMILY

Over the years my son’s illness has taken its toll on my family and there’s no point denying it. I learnt to dream a different dream as to the plans I had before. I have heard about a lot of marriages that didn’t make it because of the stress of AUTISM and the ones that made it paid a price which they alone can tell the tale.

This might sound extreme but it’s like DEATH in the family. You grieve the life your son will never have and embrace the one you have been given. When life gives you lemons, make lemonade says, Elbert Hubbard. It’s called making the best of the situation and living.

MEN, IN PARTICULAR, LEARN TO INTERNALISE WHEN THEY FIND THEMSELVES IN SUCH SITUATION. AS AFRICANS WE ARE VERY IMAGE CULTURED AND HAVING A CHILD WITH A DISABILITY IS BEEN FROWNED UPON.

ONCE A FATHER IS NOT ABLE TO BOAST OR BRAG ABOUT HIS CHILDS PROGRESS AMONGST HIS PEERS OR FLAUNT HIS SKILLS AT A SOCIAL FUNCTION THEN THE WOMAN/WIFE’S ROLE AS A GOOD MOTHER IS QUESTIONED REGARDLESS OF WHETHER ITS HER FAULT OR NOT.

THERE’S A STRONG PUSH FOR DENIAL IN OUR CULTURE WHICH IS VERY SAD. WE LIVE AND SCHOOL ABROAD TO BETTER OUR LIVES BUT RUN BACK TO CULTURE WHEN PROBLEM ARISES IN OUR HOMES/MARRIAGE.
It’s such a shame really!!

Relations with Siblings.

In terms of getting the balance right at home with the other children, it’s heartbreaking as well.

I have a six-year-old daughter Davina and one-year-old son Daniel. Daniel is still a baby but Davina who was born less than 2 years apart from David suffers the consequences a lot.

David is unable to form a proper relationship with his sister. Davina feels David gets special treatments and she doesn’t, so this takes a toll on her and as a parent, it hurts badly. I mean she has this big brother who is not really a big brother and often times I have to sit her down to explain things to her but she doesn’t fully understand most of it.

She’s always bored and attention seeking due to the lack of communication between both sibling. Most times I have to be her friend and take her everywhere with me. We don’t go on holidays often except within the UK due to David’s condition. We tend to travel to places not long on the plane/train.

Although my son’s illness changed my life completely, I haven’t allowed it to define me. I have to admit it did at first shake me, but everything turned around when a very good friend of mine died on 06/11/2016 which happened to be my sons 6th birthday. I got the dreaded phone call that completely changed my life!

That was a defining moment for me. One moment she was there and the next she was gone, a friend of over 20 years died without any signs or warning leaving behind two kids and a husband!

While I cried my heart out, I realised right there and then how selfish I had been with my life. Blaming God for everything that happened to me. Even after the bible made it clear to us In John 16:33 “I have told you these things, so that in me you may have peace. In this world, you will have trouble. But take heart! I have overcome the world.” So I went back to the Lord and the changes in our lives began.

I stopped medicating on antidepressant and lost weight of over 5kg. I had control of my mind and body again. “Anti-depressants are poison”. Please avoid as much as you can!

I started prophesying things I wanted to see in my children. Believing in faith and not by sight. I focused more on God and not my problems. Gradually I built a relationship with my son David by showing him nothing but LOVE. He began to trust me more and started opening up and using more words. We are still on the journey of speech recovery but a massive improvement from 2 years ago.

David is also able to manage task on his own like (dress himself, use the toilet, identify objects and sounds in books).

LOVE is the key. Our children can feel all emotions regardless of their condition. Please, parents, be aware.

FAMILIES LIVING WITH AUTISM

You are doing great and don’t ever doubt your capability as a parent. God gave you that child for a reason.

Yes, you will be judged and criticised but never lose focus. You have a treasure in your family. A unique and blessed child. The word SPECIAL NEEDS means GREATNESS hence the reason the devil tries to turn your Joy to sorrow.

There’s still no concrete explanation for the cause of AUTISM because there’s none. It’s just the devil trying to change the destiny of our wonderful children. In them, we have RULERS, LEADERS, INVENTORS, SCIENTIST, and the List is endless. It’s a great honour and privilege to be chosen parents of such wonderful gifts from God.

Please know that God allowed this to happen for the benefit of us becoming AMBASSADORS and creating awareness on AUTISM and a soldier for Christ. If God can allow his son Jesus to go through that amount of pain and suffering for our sake then what we are going through won’t kill us, it’s meant to make us stronger.

These children deserve to be SEEN, HEARD and CELEBRATED not hidden away in our homes. The more the world recognises and accepts them, the better their chances of adapting quickly to our world.

It’s HARD work but with God all things are possible. Do things at your own time and pace. Don’t be afraid to seek help. (Especially from medical professionals) Listen and work with care providers as well. Do not be ignorant by saying (God forbid) the signs are there so please be realistic and help your child. Faith only works with action.

Take good care of yourself and maintain your sanity. Your family needs you.

HOW TO SUPPORT
1, Pray for them
2, Support them with childcare (2-3hrs) so they can have a moment to breathe. No amount of money can buy peace. Autism requires a lot of physical hard work. Most times all we need is just a few hours to cool off. (ME TIME)
3, Don’t Judge- Always encourage and support us. The moment our child was diagnosed, we already felt like a failure so please don’t point out our flaws especially when we make parental mistakes.
4, Give as your heart desires. Time, friendship etc
5, Respect our privacy as you would never know what we are going through emotionally.

Be Blessed.