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For many of us, our child with additional needs or disability is not our only child.
Those of us that are the parents of a child with additional needs, or who support a child with additional needs, so often put so much of our time, energy and focus (and rightly so) into helping that child or young person to thrive, to engage with the world, to develop as fully as possible, to be a part of all that we do… It can become all consuming, demanding much of our conscious and unconscious energy as we do all that we can to make a difference.
But for many of us, our child with additional needs or disability is not our only child. We may have another child, or several others, all of whom need love, nurturing, care and support.
In our case we have Phoebe, who at 19 is two-and-a-half years older than James and has grown up for most of her life in a home that includes a child with significant additional needs, and all that that brings. This is an open letter to Phoebe, and to all the brothers or sisters of children with additional needs or disabilities…
We love you, you are very, very precious to us and we are enormously proud of you for being the fine young woman that you have grown into. This simple letter is just a small way of acknowledging all that you do, often unnoticed and sometimes unthanked, to support your brother and us…
You have often been a junior carer for James, helping out with a range of support tasks that help to keep the wheels on our particular family bus. You are great at spotting when James is starting to get distressed about something and you either let us know or, usually, will just deal with things yourself. You’ve cleaned up stuff that you would rather not see again (but probably will), you’ve got up to come to help in the middle of the night if James is having a meltdown, you’ve watched endless episodes of Postman Pat or Percy the Park Keeper with James, helping him to choose the next video to watch.
You’re also great at calling us out when we’re letting James off lightly for something he’s doing that is less to do with his Autism and more to do with being a 16-year-old who is pushing boundaries!
But you’ve also missed out on a lot of things that many young people take for granted. The times we’ve had to skip going to something, or come home early, because James is struggling… Going out as a family is that much harder when an unpredictable younger brother may do something that either means we have to abandon our plans or keep within a small set of activities that we know James can cope with. We can’t just decide to go out to the movies, or for a meal, on a whim as most families can!
We tend to invite people around to our house rather than visit, generally because it’s easier for James when he has the familiarity of his own den, his own things, and we’ve got everything we need to support him; whereas you might have liked to go somewhere different, anywhere different, for a change! Even family holidays can prove unpredictable, with a simple trip to the beach or to some gardens being fraught with uncertainty!
As parents, we were able to understand a little better at diagnosis what having a child with additional needs would mean (although in reality we still had everything to learn!) For you, who were five at the time, it just meant your brother was a bit different to the brothers and sisters of your friends. As you grew up you noticed the differences more, asked more questions, learned more about your brother, were affected more by living with him.
In all of this, you have rarely complained (although you have your moments!), you get on with life and the challenges that being the sibling of a brother with additional needs brings. “Be completely humble and gentle; be patient, bearing with one another in love.” Ephesians 4:2
There are times when you mention that all of our time and energy seems to be focused on James, and that you don’t get enough of our time and focus, and that’s something for us to do better at… to learn from and to change.
But we are so incredibly proud of you, Phoebe, for the well-rounded, caring, thoughtful, intelligent, faith-filled young woman you have grown up to be. There are many thousands like you across the country, who quietly cope while their brother or sister is having a difficult day. Thank you for being such a wonderful daughter and such an inspiring and caring sister; we love you more than we sometime show, and more than you will ever know.
Mum and Dad xx”
Whether we parent more than one child, or whether as children’s and youth workers we care for them in other ways, let’s celebrate what a wonderful contribution they make to the world, how hard it can be for them sometimes, and make sure that we love, nurture and care for them, thanking them for all that they do.
Mark Arnold, Director of Additional Needs Ministry at Urban Saints. Arnold blogs at The Additional Needs Blogfather. This article was re-published with permission.