My daughter has needs. They aren’t special.

Sarah Kay by Sarah Kay Additional Needs

Sarah Kay

Sarah Kay

An honest (and hopefully positive!) chat through the rollercoaster journey we have found ourselves on; hopefully to raise awareness of HIE and supp...

My daughter has needs. They aren’t special.

Special needs. Additional needs. Complex needs.

Some of the labels that have been used to describe my daughter over the last 8 and a bit years. (For those who don’t know Heidi, she had an H.I.E. event just after she was born meaning she went without oxygen. As a result, she has cerebral palsy, is non-mobile, non-verbal, has a tracheostomy, global developmental delays, fully tube fed, epilepsy, dystonia…quite a list, and mainly she is amazing!).

The first time I heard the words “special needs” and “complex”, when Heidi was still only a few months old, my stomach lurched. Of course, I had heard the terms before, but all of a sudden, when they were talking about my beautiful, perfect daughter, the words hit me and hit me hard.

The more I thought about it, the more I disagreed with the choice of words.

I understand they are very much in use across a variety of settings – hospitals, schools, equipment providers for example – but is it time they were updated?

The way I see it now, several years into our journey, is that my daughter has needs.

Like any other little girl or boy, she needs warmth and comfort, she needs food and water, she needs to know she is loved beyond all measure and always protected. This doesn’t make her special – it makes her like everyone else.

Yes, her comfort may include using pieces of equipment (like her moulded seat, or slings and hoist); yes, her nutrition and medication may need to go in via a gastrostomy (feeding tube) directly to her stomach rather than her chewing and eating; yes, her communication needs may need to be tailored to suit her understanding. But her needs are not special.

Increasingly I see parents like me, advocating for our children, protecting them, and fighting for what they need.

Maybe we should view it less about the child’s differences, and more about what we need to do differently. How can we, as society, include them? How can we make life easier for them and their family? How can we ensure that everyone has the same access to everything, the same support, without the parents having to fight.

Let’s make it the norm, that everyone is fully included. Now that would be special.

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