It’s easy to feel isolated when you have a child with a dual diagnosis, writes Debbie Austin
My ten-year-old daughter Lucy has a dual diagnosis of Down’s syndrome and autism and when stressed, has behaviours that can be described as challenging. As time has gone by and it’s become clear that autism is her primary need, we have begun to feel very different and distanced from the Down’s syndrome community.
The dual diagnosis brings strengths and challenges. Lucy’s strength is her memory. She is particularly good with things like songs and words, and has perfect tuning when singing.
Our greatest challenge as a family is that Lucy struggles socially; she wants social contact but it has to be in a way she can predict. This limits it to very familiar people who understand her social cues and social scripts, and to situations she understands.
One of the biggest issues for me is that I crave social contact, although I know this can be a real struggle for Lucy. I find myself thinking things like who should we spend today with? But in truth, Lucy is happiest when it’s just us and it’s easiest when I can give her my full attention and respond to her needs without having to think of others.
I have to remind myself that a local event or friend’s party will not be fun for her. I have taken her to many, but I’ve learnt that to be successful I need to take a carer, if there’s someone available. If not, it’s usually better simply not go, as the stress can often push Lucy towards behaviours she and I would both rather not see.
I watch other families with children who need to have reasonable adjustments made or to have activities differentiated and the contrast to our situation is stark. Lucy doesn’t want to be there at all. It’s all too easy to feel isolated.
Moving to an excellent special school has been very positive as she is so much happier. I hope new activities for us to try at home will come from her varied curriculum. It’s easy to run out of ideas when her world is really small.
My daughter is a delight but as her family, we need good social support to ensure we can meet her needs.
Our community has two jobs to do: to support and to educate. However, we tend not to access the support in terms of events organised for children with Down’s syndrome as they are too socially challenging for Lucy. We could do it with a carer, but our precious respite hours are saved to give me and my husband some time together.
Imagine a circle were drawn big enough to fit in every activity that most children with Down’s syndrome can access or enjoy when reasonable adjustments are made and access is supported. Then picture a second circle of the size needed to include just the activities that my daughter and many with complex needs can enjoy. If you could see how much smaller that second circle is, I think you might understand how socially limiting the experience of our family really is.
About the author
Debbie Austin is the parent of ten-year-old Lucy, who has the dual-diagnosis of Down’s syndrome and autism. She originally contacted the Down’s Syndrome Association with this piece for World Down Syndrome Day.