For many who parent children with special needs, they are not the only child in the family. We may have other children also needing love, nurturing, care and support. Our other child is Phoebe, who at 19 is 2 1/2 years older than our autistic son James. This is a letter to Phoebe and to the other child, the brothers or sisters of those with special needs or disabilities.
We love you, you are very precious to us. We are enormously proud of you for being the fine young woman that you have grown into. This letter is a small way of acknowledging all you do to support your brother and us.
You are a carer for James, helping out with a range of tasks to keep the wheels on our particular family bus. You are great at spotting when James is starting to get distressed. You’ve cleaned up stuff that you would rather not see, you’ve helped in the middle of the night when James was having a meltdown, you’ve watched endless episodes of his favorite videos with him. You call us out when we let James off for something he does that is less about autism and more about being a 17-year-old who is pushing boundaries.
But you’ve missed out on things many young people take for granted. The times we skipped going to something, or came home early because James was struggling. We can’t go out to the movies or a meal on a whim as most families can though you might have liked to go somewhere different for a change. We invite people to our house rather than visit because it’s easier for James in the familiarity of his own den, and we’ve got everything we need to support him.
We were able to understand what having a child with special needs would mean, although in reality we still had everything to learn. For you it meant your brother was a bit different than 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 rarely complained, although you have your moments. You got on with life and the challenges of being the sibling of a brother with additional needs. 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. We need to do better, to learn, and to change.
We are incredibly proud of the well-rounded, caring, thoughtful, intelligent, faith-filled young woman you have become. There are thousands like you, who quietly cope while a brother or sister has a difficult day. Thank you for being a wonderful daughter, an inspiring and caring sister. We love you more than we sometime show and more than you will ever know.
“Be completely humble and gentle; be patient, bearing with one another in love.”
Mum and Dad
Whether we are parents or the children’s and youth workers who care for the other child in other ways, let’s celebrate the contributions siblings make to the world. Let’s acknowledge how hard it can be for them, and make sure that we love, nurture, care, and thank them for all that they do.
Mark Arnold is the Additional Needs Ministry Director at Urban Saints, a leading national Christian children’s and youth organization. He is co-founder of the Additional Needs Alliance, a national and international advocate for children and young people with additional (special) needs or disabilities and is passionate about enabling everyone engaging with them to be inspired, trained and well-resourced. Mark is a Churches for All and Living Fully Network partner, a member of the Council for Disabled Children and the European Disability Networ. He writes an additional needs column for Premier Youth and Children’s Work (YCW) magazine and blogs at The Additional Needs Blogfather, He is father to James, who has autism spectrum condition, associated learning disability, and epilepsy. To find out more about how Mark’s work can help you, contact him at: firstname.lastname@example.org or @Mark_J_Arnold. Image rights: © author’s own
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