Fri | May 29, 2020

My special son, Brian

Published:Sunday | May 20, 2012 | 12:00 AM
Maureen and her son Brian
Anna-K and her brother, Brian, going out
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Maureen Webber, Contributor

While the print media does much to honour motherhood, it assumes we are this homogeneous mass.

Sometimes there is acknowledge-ment of some challenges, but all in all, the articles focus on parenting a normal child. Although, truth be told, I do not think one exists. I want to speak of one particular group of mothers.

One day when I was talking about Brian, my firstborn, I used the phrase 'special needs' and the person responded, "You know all children have special needs?" and, of course, I wanted to scream. Try my 'special needs' son.

On the very day that Jamaica celebrates its 50th birthday, Brian will celebrate his 20th. He was born on August 6, 1992. Imagine the things your 20-year-old son is perhaps doing. Close your eyes. He is working; he is in school; he is dating ... aaah, okay, you are still not ready for that ... his head is always stuck in the fridge and no food is safe; he would rather be with the guys than with you; he hangs out and gets in late.

Cop-out

I scolded myself. The phrase was my attempt to avoid a list of questions and intrusions. But here is the fact: Brian has severe to profound intellectual disabilities. On the brink of 20, he is somewhere between a two-year-old and a 14-year-old. Note to self: Despite being non-verbal and not processing the spoken word, what is developing on track is his 'teenager behaviour'.

There is a world we live in, us mothers of children with disabilities. Brian - and many like him - will not get to do many of those things I mentioned above when he is 20. On any given Sunday morning when we head off to church, Anna-K, his 15-year-old sister, and I say a prayer for one thing: "Lord, let Brian not have a number two while we are there."

But truth is that, if he does, she and I take him to the bathroom to do the necessary clean-up operation. We find time to laugh about how bad a job I am doing trying to save my church dress, or bemoan the fact that there are not enough wipes in the bag, and she or I should have checked. We emerge - all three of us - like a unit that has gone into battle, defeated the enemy, and ready for the next. So one may ask, why is there no celebration about the life we live? Yet, I know we are celebrating.

So when special occasions like Mother's Day come around, instead of bemoaning the fact that no one is celebrating us, I celebrate us.

New label

First, I would like to banish the term 'special needs'. It is a cop-out, a desire for everyone who struggles with being politically correct. I am working to embrace the current 'label' for Brian. It is intellectual disability, or to be quick about it 'ID'.

Truth be told, many parents of a child assigned that label will tell you, "I am not sure of the nature of his intellectual disability."

What I see and I celebrate is his different abilities. If I am away on travel for more than five days, when I get home he refuses to interact with me.

"How dare you abandon me," he is saying.

If you arrive at our home and you are uncomfortable with him, Brian knows. There have been instances where he has led people by the hand and insisted they leave his home. He has emotional survival instincts which have saved me from many disastrous relationships.

Being a mother of a child with a disability means you have entered another zone. I will not even dare to speak about those of us who have to solo-parent. There is someone in Trinidad who shakes his index finger at me when I use that term.

We give birth, we assume all will be 'normal'. For some of us, it is immediately on birth we know we are about to enter new and uncharted waters. For others like myself, it can be a year after birth. Nothing prepares you for this; first there is some level of grief, some sense of loss. And reactions vary, some will say at first, "Why me?", but most of us get to the point when we think as I always do, "Why not me?"

I have concluded that I am among a group of special elite mothers, I have been chosen, hand-picked by God, to rise to the occasion and parent a child that requires, by far, much more than others.

I want to celebrate the mothers of children with a range of disabilities. There are those of us who have and can make the choice to keep our children with us and then begin to chart a course through a minefield in a country where there are little opportunities and only handicaps. I salute you; your lives are forever changed.

I am hoping that, like me, you have adjusted to it and, in fact, have come to appreciate the joy and the specialness of being selected by God to parent a person who requires that you use all that He has given you to be a special mother to find peace, but not to settle for what is being served for your child.

Feeling of emptiness

For mothers who had no choice but to leave their child with a disability at some children's home because this is their only option; they have themselves and others to feed. I celebrate you too. I have met a few of you and I understand the emptiness you feel not having your child with you. I also know that you are doing your best. The resources you have are limited and there is no support from the state. You made a choice a parent should not have to make, but it is the only one you could. Let us continue to ask for the state to recognise that it makes more sense to provide that support to you than to the children's home. I hope it was possible for you to visit your child on Mother's Day, wherever she/he is. It is our love that makes them complete and they need to feel that.

As mothers, let us celebrate the things they said they would never do. For some, our children have had the opportunity to be in very special learning environments and you are seeing the progress. Others are graduating from tertiary institutions or are engaged in special programmes like being a part of Special Olympics. Through the power of sports, they are on the playing field of life. For others, our children have jobs.

We (Development Options) just hired a university graduate, a young man who is visually impaired (blind). I have a feeling his mother is celebrating.

If you are a mother of a child or young adult with a disability, celebrate her/his abilities and please give yourself a hug, you have done well!

Email feedback to lornamfw@yahoo.com.