Impossible choices

Don’t let the photograph above fool you: sometimes, you will be facing the impossible.

No amount of positive thinking, go-getter attitude or wordplay (I’m possible…) will change the fact that you are faced with a situation in which you have no sensible choice.

In the world of disability, we are constantly urged to develop resilience, to find solutions, to reach out to “our” community for support. We are also members of the wider community, but strangely often only in terms of the demands placed upon us.

It’s September, which in the UK means that it’s time for children to go back to school. As parents, we have a legal responsibility to get our children to school. As parents of disabled children, that school is often far away, while another child has to be somewhere very different at the same time. I’m not even thinking of those families who have two or more children, all needing specialist provision, so in several distant schools.

The theory, the legislation is simple and supports families by offering transport to those children. The reality is more complicated: even where families are found to be eligible, getting appropriate transport in place at a time when fuel cost is exorbitant, when taxi drivers have found alternative employment and in a county with limited public transport is seemingly impossible for the local authority to arrange.

So families are sent letters inviting them to drive their children to school in return for an allowance – which seems a simple solution.

Putting aside complications of how that allowance is calculated, let’s focus on practicalities. If I have two children to take to two schools that are not close to one another, try as I might, I cannot bend the space time continuum. I will never be physically able to do it. If I work full time, if I am a single parent, if I or my partner are disabled or unable to drive… If I do not have a car, if I cannot afford the fuel because the allowance is too small, or arrives too late…

Transport is only one of many quandaries families face that leaves them with impossible choices. I’d like to share a story from my family that illustrates choices we face every day.

Nineteen years ago, almost to the day, my baby was rushed to hospital and quickly diagnosed with leukaemia. I had two toddlers under the age of 4 and a husband whose work commitments (and therefore our financial stability) were intense. The hospital did not allow other children to attend appointments, let alone visit a sibling in the bone marrow transplant ward.
My older child was in school, which at least meant that he was taken care of, but my younger one was too young. I was faced with an impossible choice. I had to take the baby to appointments – that was necessary, immovable, as were the hospital rules. But I had nobody to leave the 18 month old with…
When we live with impossible, we somehow find ways, but they have consequences. I knocked on doors – luckily we lived in a small village, but the reality is that I left my toddler with people I did not know, whose houses I had never been in. Weekly. For several months. Rarely did she spend the day in the same house.
Twenty years later, I’m increasingly convinced that this is one of the causes of long term trauma that she must now live with (or process, or, or, or…). Early trauma changes brain development… So my impossible choice caused (or contributed to) another child’s additional needs.

Was I wrong? I don’t believe so. I did what I had to do, the only thing I could think to do. And I’m forever grateful to those neighbours, those strangers for helping. Nevertheless, it was an impossible choice, with unbearable consequences.

If you are in this kind of situation…

Your feeling of panic and loss of control is appropriate – you are faced with something that you most likely cannot fix. You are right in your assessment.

Try to be still. Put a hand to your chest or your belly and notice your body. Are your fingers or toes fidgeting or clenching? Is your jaw in a vicelike grip? Are your shoulders trying to reach above your head?

You cannot change the situation, but you can change your physical response to it. Breathing exercises, mindful practices, meditation – call it what you will, but these activities will allow your brain to calm and move a small step away from blind panic.

Following that, I would suggest that you remember that your job as a parent is to keep you and your children alive. Feed them, keep them warm, keep them safe. For today, that is enough.

The next step in my experience is to ask for help… but today, I’m going to avoid that. Because what I’ve suggested so far is already an enormous challenge for anyone dealing with this kind of situation. Instead, I’m going to talk to others:

If you are not!

How many times have you seen a panicking parent in a supermarket, or a mother in tears at the school gate? How often do you notice a “naughty” child?

Are you a professional working in education, health, or social care? Have you been on the receiving end of an “angry” parent? Have you sent out a letter explaining that you cannot provide what you know you should?

I invite you to read this and truly understand that the family in front of you has no choice. I invite you to hear the desperation and the absolute determination to do the right thing for their children in their voice. I invite you to sit and think about the practical implications of what you are suggesting.

And then I invite you to offer truly practical suggestions. It may be that a school has to concede that a child will arrive late to school – how can you as a school leader make that manageable for the child, the family and indeed their classmates? It may be that you can support two families to get to know each other and create a support network.

What is the origin and purpose of the rules you are imposing? Are they truly necessary? What reasonable adjustments can you make to those rules to support that family? (And oh yes, I used that phrase very deliberately).

We are human beings, and as such, we are group animals. We need each other, we need community for exactly this situation. When one of us falters, it’s for the others to pick them up.

So today…

• Look around you, notice the one faltering
• Do not walk by, your eyes turned the other way
• Do not offer platitudes, and trite phrases such as “what hurts you makes you stronger”
• Stop.
• Take time.
• Listen.
• Think of a way that you can help, and offer…

And every time you see a parent in crisis who has found the strength to feed her child, keep him warm and safe, notice that they are doing exactly what must be done and let them know what an amazing human they are.