How are you doing? I have a short story today. There was a man who recently passed away from cancer. Before he did, he had gone to over 100 special needs homes for his autistic son. Someone say, ‘Father of the Year. He was a single father who dedicated his life to caring for his son.
One thing scares me more than snakes and heights: “What will happen to my brother when we as his family are no more?”
But more context: My brother has autism, and he is not non-verbal; he has limited words, but we are building those words for him on a gradual level, and we are actively trying to build his independence.
But the future. There is nothing that gives me more anxiety than that.
And nothing makes me happier than when I see people put things in place for their child with a disability. But let’s be honest; we are in Nigeria. I manage a community of special-needs families, and I know not many of them have the privilege of travelling abroad for more opportunities for their child, or even saving like 20,000 a month for a trust fund.
It is financially hard.
Nigeria doesn’t make things easy; and just so you know that I’m not making it all about Nigeria, some other communities barely know what Autism is, and still hide their special needs children.
But I’m not fighting for Nigeria today; I’m talking about legal guardianship. A while ago, I thought about it, and it sounded like the obvious thing to do, but then I started thinking more.
More in the sense that my brother can do so much more.
Unfortunately, I let go of my idea of my brother having a white-collar job where he would go to the office, because let’s be honest, Nigerian offices are not inclusive, and I don’t blame them. There still needs to be a mindset to have.
I recently thought about upskilling my boy, making sure he has enough skills to be independent, and many of you know how far he has come because I am very vocal about it on my social media. Tobi washes the plates, cleans, cooks with me, and even understands things like sewing, painting, and music. That’s my boy.
But there is more than he can do. Gone are the days when I would cry to God, “Oh God, why?” What did we ever do to you?”
Now, I’ve reached the point where God gave us this child, and God can take care of this child. If he can take care of that annoying bird I wanted to stone by my window, what more can he do for Tobi?
This is the mindset I want everyone to have. God will handle it, but I must do my own part.
To be honest, I’m not sure I have everything figured out, like where he would go and stay; whether places in Nigeria can perfectly accommodate him if anything happens; and if it's abroad, then what happens?
All I know is God will help me.
Before Tobi needs a legal guardian, he already has God, and honestly, that’s darn enough.
But yeah, where do you start as a caregiver who wants to give their child a future? Start by saving as little as 500 naira- 2,000 naira every month for this child. Put it in an account you can’t access; get a lawyer to set up a trust and decide what happens next.
And one other thing? Create an ‘About-my-child’ document for your child. Include what he eats, what he does, what he avoids, how to approach his education, and where he is in his education. This document can help anyone lucky enough to take on this child.
I say lucky because my brother is a joy and a beautiful human. Anyone who spends five minutes with him has witnessed the glory of God, and that’s on period.
But if he has a meltdown in those five minutes, I’m really sorry.
Yes, have that document, and please keep educating people about special needs. Your little words about it are like a drop in a bucket; they may seem small, but they add up.
And if you’re overwhelmed by all of this and need someone to talk to, there is always a weird woman here named Toyin. I don’t have the money of the one per cent of the one per cent. I don’t have the platform of a president, but I have something. An ear to listen to, a shoulder for you to cry on, the strength to help you start the process of the future talk, and finally, a mandate (but I’m going to leave that to God to explain)
Yes, I’m always here.
I seem all bravado, right? Like I’m Denzel Washington, with an explosion behind me, walking in slow motion, and I even remove my glasses.
But let me tell you: I still panic; I still have those occasional fears of ‘What will happen?’ But I take that fear to prayer, and I remind myself: The Lord holds my family and me. And nothing and nobody on earth can pull me away from the precious, reckless, and unconditional love of God.
Alrighty!
Seems I took this advocacy talk to church, right?
Oh well; the anointing dey flow sometimes.
If you want to join Your Safe Space as a mother, sibling, professional, advocate or even supporter, here is the link.
That’s it. And if you need anyone to talk to, there is always a weird woman here for you.
Shalom, guys.
Love,
The Faithful caregiver, Twi-Twi.
More so, shout-out to my family who loves with the love of Christ. There is love at home!
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