Anticipation

Posted by Sharon F on 4th March 2024 Additional Needs, Advice & Support, Disabilities

I have just returned from Ikea. It was a simple trip out with my daughter and her carer (it would be impossible to do this on my own; my heart rate would be through the roof). It actually went pretty well i.e. without major incident.

We did have to change our plan when we arrived by buying her a full hot meal that we had not intended to. She is used to going there to eat, it’s one of the few places informal enough that we can just about make it work. So, when we arrived, she understandably dragged us to the café. It made complete sense to her and there was nothing I could do. Refusal would have meant a heart-wrenching meltdown and her completely refusing to move. This is not because she is ‘spoilt’. It is simply that she does not have the understanding or communication for us to be able to explain to her that we cannot always have a meal in this place. She would be bewildered and extremely sad. It would not make any sense to her. So we have to ‘give in’.

This is a really hard thing to get used to and to explain to others.

It is unimaginable to most people that you have to do this but there really is no kind alternative once you are in the situation. The only alternative is going somewhere else where she does not have the food association. I would love to be able to gently explain to her, as I could to a typical nine year old, that we don’t always eat out because it is a treat, and it is expensive, and that we will make a nice tea at home.

The fact that her understanding is not even close to this at least makes our course of action clear cut. It does not however, help me with the stares from others as she marches past the queue straight to the food counter. There is nothing I can do. I am ready with my lines, rehearsed and ready to go if anyone confronts me, but silent judgment tends to win out, and people simply just look. My heart rate rises, I feel defensive, sad and on show. Part of me wants to grab a chair and give a speech to (what feels like) the crowd of people staring, to tell them she has a rare syndrome, that we deal with seizures most nights, that the fact that she has fewer words now, at 9, than she had at 3, makes my heart so painfully sore. But instead I crouch down to her, look at her beautiful face and talk to her. I try to focus solely on her.

Today’s trip went largely without incident but I am still settling down from it.

I realise that this is because, when we are out with my daughter I carry a constant feeling of anticipation, ready for something to happen at any moment. A display tipped over, glass smashed, other’s personal space being invaded, a seizure, breaking free, 25 minutes refusing to move, wince-inducing yelling, turns, stares, tuts. It’s only when we shut our front door that I can begin to relax. I feel exhausted.

On the way out of the shop, my little girl was beaming on the escalator. I took photos as if we were at a theme park. My heart soared to see her so happy. Herein lies the secret joy that others don’t see.

I do believe this specific type and level of anticipation to be exclusive to having a disabled child. As with so many other aspects of our lives, this can make it impossible for others to empathise with. In the meantime, all we can do is focus on our child. For that is where the magic is.

The picture depicts another recent trip to Ikea where an ill-thought-through ride on a flatbed trolley resulted in a 20 min delay in the car park, as our daughter refused to get off.