Carly and her daughter at the airport

SEN parenting is a relay not a sprint

7th March 2019

This month I am writing to you from Geneva. From the hotel lobby awaiting our taxi to the airport to be precise. It’s at times like these when I feel twice as grateful for having this wonderful columnist role for My Family, Our Needs.

Which is probably quite selfish actually. I think the point of me writing a column is to give hints and tips on parenting and SEND as opposed to a self-indulgent place to vent but HOPEFULLY I can try and combine these in March’s edition. There are (almost) definitely some words of wisdom in here somewhere as well!

Talking about parenting and motherhood, I’ll start by quoting Mother Teresa who once said, ‘if you want to change the world, go home and love your family.’

My mother (Cathy, not Teresa) has a similar quote she pulls out of the bag now and then which is ‘If everyone looks after their own corner, the world will be alright.’

I completely and utterly agree with both mothers; as a mother myself, however, I like to think that I can somehow do my bit for campaigning whilst simultaneously caring and being a mum.

Home is where the heart is

In my earlier advocacy years there were indeed periods of never any more than 1-4 days where I’d be traveling away from home and my girls would stay with my parents. That is simply because:

A) I was new to travelling alone without a partner or family member and I needed to learn how to do that independently before adding small people into the scenario.

B) It seemed logistical.

C) I didn’t expect to be in advocacy so long and assumed there would be a handful of travel opportunities that would soon dry up.

So naturally I jumped at the chance to sometimes travel here to the United Nations in Geneva, or promote my autism film at Cannes Film festival – which sounds incredibly glamorous and make no mistake it absolutely was! I got to get all dressed up and walk the big red carpet and despite being very rule driven I totally broke the no selfies on the red carpet rule (let’s face it I was never going to be invited back anyway!?). That being said, I also recall spending the evening in my hotel watching Chris Packham on Springwatch rather than attending one of the Cannes Film Festival parties where the Kardashians were… it’s just not me. I thought maybe it could be but it’s not!

One time I went to the Middle East. Which was a catalyst for much of the work I’ve done at home since, as it was an important time of learning curves. If I had to edit mother Teresa’s quote from what I learned from the Middle East it would say, ‘if you want to change the world, go home and love your country.’ I came home with not only a greater appreciation of my country by comparison but also a greater appreciation of the everyday; of routine, of family and of home. Being a naturally very homely, family orientated woman, I thought this wasn’t possible.

There’s a big difference between fantasising about being somewhere exotic and glamorous whilst you wash the dishes of the umpteenth time that day and actually going out there and doing it. The irony being that when you get there you then realise this is a once in a life time experience to bask in but it’s not a lifestyle to enjoy. You find yourself after 24-hours missing your family, home life and even the washing up routine so much it moves you to tears.

But the advocacy didn’t dry up, it became bigger and the opportunities became greater so I decided to try and combine the ‘stay at home mum’ hat, the ‘home ed mum’ hat and the ‘self-employed advocate’ hat all into one, all of the time.

Which meant learning to juggle travel, work, mothering as a single parent alone whilst abroad – gulp!

Fighting the fear

Airlines have been fabulous (particularly EasyJet and Virgin Airlines). I have a Youtube video giving hints and tips for travelling abroad, alone, as an autistic person who is also parenting autistic children.

This leap of faith has meant that the girls have experienced attending the United Nations, in fact one of my daughters at 14 addressed the UN with a speech on her autism hopes and dreams in 2016.
I’ve also been able to take them to America when our autism film won 2 awards out there and, more locally, Scotland and the like.

They are very confident, worldly, inquisitive girls able to understand culture, intersections of society and have a great respect for other religions, races, ages, classes and outlooks all of which I truly believe they wouldn’t have unless they had travelled as a non-tourist as younger children.

It was all going swimmingly

So far, so good, everybody’s had a great time, immaculately behaved (when it mattered only of course!) and no major hiccups… until this time.

This time my youngest got sick, some sort of a 48-hour bug. We managed to get the report and it’s covering letter for the review to the UN in time for the noon deadline, but after that the next 48-hours were spent in the hotel room on nurse duties. All meetings cancelled, no family or friends on hand to help take over for 10 minutes or deliver food packages or just let you know that they are there if you need them. It was literally the two of us confined to a small, but lovely, hotel room and it felt awful.

I didn’t feel awful that I couldn’t attend the UN meetings. I did all I had to do on paper and we got that handed in; I felt awful as I felt I’d let my daughter down as a parent.

When you’re abroad and you literally have one another that is it. I couldn’t leave her to go to the pharmacy as it wouldn’t be safe, and I couldn’t take her with me as she was too sick. Luckily I had packed some child friendly painkillers and used my credit card to order in food or supplies that she would like. I can now tell you that a KFC family bargain bucket in Switzerland is £40. Hardly a bargain at all…

I felt awful that, as stunning as the hotel was, she’d probably have much preferred to be at home in her own room with silly Chester the cat snuggled up to her than be there. When you’re sick all you want is your own bed and your mum. She had me at least.

The hotel had a lovely swimming pool in it and her favourite thing to do is swim. She managed to enjoy the pool massively on the first evening before she got sick but I felt awful that she was missing out on that too. I don’t swim so I’d never have booked that hotel if it wasn’t for her, I thought of all the memories I had hoped she would make going ‘poof’ in thin air.

The ladies from other organisations were very kind and offered to make sure my report was given to the right people and although we had never met, they emailed me to check in that we were alright. One lady said, ‘there’s wisdom to be found in this,’ and I guess that wisdom is it’s fun to be able to do it all as a woman.

It’s empowering for daughters to see their mothers be fearless, independent and headstrong. It’s possible to go ahead and do the impossible and as a woman – abled or disabled – you CAN do it alone but just because you can do it alone you shouldn’t HAVE to. Maybe it’s time to reach out and connect with others more, not only for my family but for myself as well?

Maybe it’s time to realise that for us SEN parents our journey is best navigated as a marathon relay and not a solo sprint?

See you next month x



Click here to sign up for our monthly newsletter

Leave a Reply

avatar
  Subscribe  
Notify of