Friday, 10 July 2015

Why I Don't Worry About My Son's Future

There's a common thread in many posts about having a child with a disability, and the thing that comes up most often is the worry about "what happens when I'm not here anymore".

This post isn't about that.

I don't think about it too much, because there are more than enough things to think about in our present. Should the unthinkable happen to me I know that my boys have a great dad and grandparents that love them and who will do their best to give them everything they need. Old age though? I just can't think about it. I know that practically, they will have somewhere to go. I hope that they can be together, and that they live in a  time when they will have some choice in where and how they live. I can't imagine not being there for my boys, but I choose to trust in God to provide what and who my boys need when I'm not here any more. That's all I can do. He's never let me down before when they needed something and I have some peace for their future in knowing that.

But as I said, this post isn't about that. It's not about the "what's" of adulthood for my boys, it's about the "who's".

Who will they spend their days with? Whose lives will they impact? Who will they become?

There's a common pattern in many discussions online. It doesn't matter what the discussion is, but it tends to be those controversial topics like desiring a cure for autism, ABA, whether autism is a disability; we all know the topics that get people hot under the collar, and here's a sample of the comments that fire me up every single time:

"If your child was severe you wouldn't feel that way."

"Do you really want people to have to change your adult child's nappies/diapers?"

"They'll never get a job if you don't..."

"They'll be a burden to the taxpayer."

There are more, but I'm well aware that the above are incredibly triggering for many people, as they are for me. The thing is though, that they're not triggering to me because I am worried about those things. They are triggering because of the underlying attitude that feeds them. The attitude that says that a severely disabled person is worth less in our society, and that should your child grow to be a severely disabled adult it's because of some failure on your part.

At least one of my children has been assessed as severely disabled, or having "high support needs". Bubbly has a severe global developmental delay which includes a severe intellectual disability as part of his autism "package". He requires high levels of support and supervision for everything he does. The Little One is too young for us to make that call yet, but if he too were to fall further and further behind his normally developing peers then you can include him in this too. So to those who would assume my position because of where my child falls on the spectrum:

My child is severe, and you don't speak for me.

I have at least one child who will need some level of care for the rest of his life. He is not likely to live independently. If he works it will be with substantial support, and if he is capable of that, and is happy, I will burst with pride. But if he doesn't? If the best he can hope for is a day program, and possibly needing support for things like personal care, why should that mean he is any less valuable to our society?

The overriding problem with all of these considerations is not the supports my son may need one day or what they might cost. The overriding problem is the lack of respect and value for people with severe disabilities these attitudes reveal in our community. Our community doesn't know what a severely disabled adult contributes to this world because for most, they live in a world where they're not lucky enough get to know any.

As a very green 19 year old Social Work student I fell into a practicum placement in a post school program for young adults with disabilities. My first day shell shocked me. I met people like I'd never met before. Adults my age and much older who needed full support with everything they did. Many requiring meal assistance, support to move around and yes, personal care assistance- including changing incontinence pads. Most were non-verbal, and many had behaviours our society would be uncomfortable with from an adult. Some posed a risk to others due to aggression.

I fell in love.

I stayed, for over a decade until my own family joined the disabled community. I spent twelve years of my life with people who changed me forever, and who prepared me for the most important job I'd ever have. I worked with people who 16 years later still make me light up, and who taught me more than my university education ever did.

They didn't work. They didn't live independently. They relied on others for feeding and personal care. They had to trust others to know them and to understand them. They relied on others to understand their limited communication skills and to advocate for them. Around half lived in supported accommodation, and I supported some of them through that transition. I supported some when their parents divorced, and others when their parents or siblings fell ill and passed away. I went to the funerals of those whose lives were cut short after caring for them in the days prior. They made me laugh. They made me grit my teeth in frustration. They made me cry- with every emotion you can think of, from deep sadness and worry, to overwhelming joy.

They stole my heart, and they helped to shape who I am today, and in doing that they've helped shape my family and the mother my children have received. They gave me more than I ever gave them, and they gave my family a gift they will never fully understand- peace about our future.

Those who remain severely disabled throughout their entire life don't feature in the inspirational stories that you read on the Internet. For many each day is the same. Progress is slow, and regression happens. Their families struggle- you do hear about that. Their care costs money- you also hear about that. But when do you hear about the contribution that the severely disabled make to our community? You don't, but it is there. Each individual, just by being who they are makes an impact on those who they spend their days with. In that community, one which is largely unconsidered, and undervalued by our society there is happiness. There are the threads that make up the tapestries of many lives, and they shine bright and strong amidst the many cares and concerns of this life.

There is love. There is life. There is happiness, and there is hope. The future will bring it's challenges, many of which I already feel inadequate to meet, but what's ahead is less important than who is ahead. I can tie myself up with worry for my sons, and a future I have little control over right now, or I can think of those who've walked before them, and look forward to meeting the men they will become.

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